Insular
by Chris and Vic
Although we share ideas and advice and offer group support on-line via blogs and support lists, we are known in the family of nations as American individualists. The history of the American colonies necessarily demanded this “rugged individualism” and pulling oneself up “by our "boot straps”. This is our ethic and our culture.
Contrast American individualism with the emphasis on community or “common good” in certain Eastern countries. The good of the many largely supersedes the good of the one and is reflected in the culture and in the law. This is the philosophical underpinning of “socialism”.
Herein lies the backdrop for an ethical question:
When we consider the resources needed to support the life of one of our medically fragile, high-risk and high-need preemies, do we ever consider how much could be done for entire communities or age groups with the resources that are now spent on one preemie?
This question has been stated in other ways. For example, How many children could be immunized or receive free or subsidized school meals with the money spent on the medical care of a single preemie in the NICU? One of the medical bloggers had a campaign to buy mosquito netting for countries where malaria is a community health issue—So, how many nets could be purchased with the funds used on one preemie in his or her first year of life? How many poor Americans could get health insurance for a year (estimate $6000) if preemie hospitalization expenses were redirected to that cause?
Next question: Does this move us? Would we agree to it? That is, the good of many should be placed above the good of an individual?
We have debated on this blog, and elsewhere, that parents should have the choice . . . Could we fathom that the community, not the parents, would make a decision that would limit or redirect the considerable resources spent on a preemie?
Does anyone have any experience with this type of ethical dilemma? Has anyone ever been part of a group that decided that the good of the many, in terms of medical dollars spent, should be placed above the good of the individual?
260 comments:
1 – 200 of 260 Newer› Newest»Before you post a comment.... Please make sure your comment is strictly based on your thoughts/answer to Chris' ethical question.
Medical breakthroughs come from these medical experiments (aka, the preemie experiments). Save one or help thousands? Could the one you save end up saving thousands? I like to think there is a purpose for such things that is beyond my understanding. I can’t wait to hear others thoughts. Great question Chris and love this new series Stacy.
-Tammy-
Helen Harrison comments:
I don't see this particular situation as an oppostion of the "good of the many" versus the "good of the individual."
I see it, instead, as a no-win situation for both the individual (the preemie, who may be "saved" after a cruel and prolonged medical course for a life of further medical and developmental problems) and the community ("the many" -- including the family) who must, as taxpayers and caregivers, foot the bill and pick up the pieces.
Those who "win" in this scenario are the hospitals whose revenues from the treatment of preemies provide the profits that underwrite the less-profitable functions of hospitals -- as well as the neonatologists, who prosper, well in excess of other pediatricians.
Then there are the therapists, drug companies, home health services, special educators ,etc., who have sprung up to provide associated "services" -- often of dubious benefit.
Neonatologist Mildred Stahlman referred, well over a decade ago, to the neonatal/industrial complex, and the many billions it brings in (to some) every year. Saving preemies does benefit a few in the community.
But as we all stand on the brink of financial devastation that some are beginning to compare to the depression of the 1930s, can we continue to afford this care, even in the context of our own munificent society?
I don't know.
Helen
Great comment Tammy.
I wonder (though there would be no way of knowing) if the answer to this question posed might vary based on your preemie's current outcome. I can't say if my answer would be different if my son's outcome were different.
I think that the thoughts about resources could be extrapolated to many things currently treated by modern medicine. Cancers, HIV, full term children with serious problems that need lifelong care...the list goes on.
I think the ethical problem in deciding if resources spent on a preemie could be spent better elsewhere is two fold. Not only do outcomes vary considerably for preemies...some go on to live unaffected lives. But, where does the line get drawn? Do we decide that others are not deserving of financial resources or "experimental" care? It is a difficult ethical question to be sure.
From Helen Harrison
to Aidan's mom who said:
"I think that the thoughts about resources could be extrapolated to many things currently treated by modern medicine. Cancers, HIV, full term children with serious problems that need lifelong care...the list goes on."
***
I completely agree with you. I think the cost (financial cost and human cost-- suffering-- are very closely related) must be considered in the areas you mention as well as in treatment for very premature babies.
Wherever the risks and side-effects of treatments arguably outweigh the benefits of treatment, the patient, or the patient's surrogates (parents in the case of infants and children) should make these decisions.
I think that if we were all *fully* informed as patients and parents(and not just given happy-talk propaganda by hospitals and doctors who benefit financially) there would be far less overtreatment, and "society" would have little need to intervene.
There are studies showing that informed patients decline modern "heroic" care in adult medicine, and I suspect the same would be true in NICU care.
A lot of what passes for "modern medicine" does not provide a real benefit to anyone but the provider.
Helen
As the parent of a former 26 weeker with a very good prognosis for a fairly normal life, I have to say that though our journey was not without heartache, my story has a happy ending. A "roller coaster ride" has way too thrilling of a connotation to describe the whole scary NICU experience. Since all those dollars of overpriced hospital care, treatments, specialists, etc did ultimately save my daughter’s life, it is hard for me to question their purpose and place in our society. I agree with Tammy that the "one" we save might later be the one to end up saving thousands. It's been said that the way you can judge a society is by how they treat their young and their old. To not look after our youngest most fragile and give them a chance to thrive...
However, steering the question in a different direction. In 2001 Americans alone spent $14 billion dollars on anti-aging, while in 2007 the entire world only spent $8-10 billion on AIDS research. Perhaps rather than asking whether our money should be spent saving a life we should re-evaluate where our societies priorities are. A tiny baby versus trying to find the elusive fountain of youth. Just sad.
Thanks so much to both Stacy and Chris for starting off this discussion. I'll definitely be sending my readers from NICU 101 over to participate.
This is such a difficult question to answer. When Caryl Rosenthal raised this question in regards to parentless preemies in the custody, it caused a lot of outrage in the preemie community, but I thought she raised an interesting (but possibly poorly articulated) point.
As with all things, I think there needs to be a limit. In my opinion, we need to stop spending enormous amounts of money trying to push the limits of viability lower until we can do better by the babies that can survive today. Perhaps then, when outcomes are more typically positive, we can try to push the limits more.
-Kristie
Rather than a socialist government program making such personal, ethical decisions concerning the life of my child, I would rather see the neonatologists that Helen says are making bigger than the usual pediatrician salaries donate that extra income to whatever worthy medical cause they see fit: such as paying for mosquito nets to children who need them.
But would they? If they have the heart and ethics of a real physician who is in the profession because he or she really wants to improve the health of society, they would, and I suspect some do.
I would prefer that NICUs be nonprofit. Instead of the “profit” covering unprofitable areas of a hospital, it could be used to further improve neonatal care. It seems there is no excuse for not providing long-term followup for all preemies. The money is apparently there, just being used for other things. If NICUs, obstetricians, neonatologists and the March of Dimes really want to figure out how to prevent prematurity and how best to treat it, then do a lot of followup! The answers are out there! Just look at how much information was gleaned from the Norwegian preemie followup study.
Finally, if you read that study, then you know that prematurity, at least in the U.S., is twice that of Norway and getting worse. It also appears that preemies of the 1990s have more disabilities than those born in earlier years. The survival of ever younger neonates will only add to the statistics.
I prefer that all medical decisions be between doctors, parents and the Source Who Shall Not Be Named. But, if we don’t shape up and get serious about prematurity followup, prevention and tried and true care, then I fully expect the Hurricane Katrina of Neonatal Coverage to intervene. Insurance companies will clamp down on just what procedures and what gestational ages they will cover in NICU care.
Rationing of medical care is already going on. Earlier this month, my 92-year-old mother was thought to have pneumonia (by an ER doc), but when the radiologist looked at the x-rays the next morning, he disagreed with the diagnosis.
I was told that my mother did not "qualify" for admission, even though she had been in severe respiratory distress, requiring
3 L of oxygen to keep her sats in the high 80's. She was back-transported to her nursing home within 3 hours (and Oh, by the way, Medicare will not pay for the "extended recovery".)
I believe that people must also QUALIFY for organ transplants . . .
I assume that means that their age, overall general health, etc. will be the criteria: physical qualifications.
But I wonder if ETHICAL qualifications are ever discussed.
Such as, respect for autonomy, which inlcudes the right to make an informed decision; nonmaleficence (first, do no harm); and beneficence, weighting of harm/risk and benefit.
Chris and Vic
I like the idea of the community choosing what to do about preemies until I think about my own child. Would I want the community deciding if my child should live or die? Would I want the community making judgments about my child, my situation, my life? Would I want some community who might not have all the information to decide my future as well as my child's? As much as a I realize that hospitals tend to go too far when they attempt to save preemies, especially in cases where the child would be better off if allowed to die, I cannot say that I would want strangers deciding if my child should live or die.
Ultimately, it is the parents who must live with the consequences of medical situations and only the parents should be allowed to make those choices. Hospitals should allow parents to make the choice to let a child die...or live. I also believe that parents should be better educated to the dangers of prematurity, as I believe with the explosion of multiple births in the past few years that people have begun to believe that prematurity is just another step in the normal pregnancy cycle. This needs to change....
I do see the dilemma in the millions that can be spent on a single preemie. I also see a dilemma in my tax dollars supporting parents with healthy children who *chose* not to work but instead collect welfare, get free food, nearly free housing, and free medical and dental care. Then they continue to get pregnant and have more children that they can't afford.
I don't know what the answer is. But to me, the answer isn't to stop saving the lives of preemies. There is no price tag on the heads of my children's lives. The insinuation that the money used to save their lives would have been better spent somewhere else is something I personally can not agree with.
I understand the ethical dilemma in spending so many tax dollars on a single child, but to deny parents the right to save their child's life is, to me, more unethical.
Parents who have full term children who have autism, cerebral palsy, low IQ, etc who need medical care, special education, therapy, etc are allowed to parent their children; I believe the same should be true for parents of preemies who are at risk for the very same diagnoses of some full term peers.
Parents who are pregnant with a baby with Downs or another genetic disorder are not forced to abort.
Although they're expensive, parents should have the right to consent to the medical treatment that is available.
Side note: I can also see how outcomes could color this ethical dilemma. As mentioned in other comments, the problem is the varying degree of outcomes for micropreemies especially. I'm sure if you are a parent of a former micropreemie who is not severely affected, it would be impossible to think money would have been better spent on something other than saving your child's life. If your former preemie is suffering as a result of their premature birth and overtreatment, I can see how some may have the belief that the enormous amount of money spent to keep this child alive could have been better spent somewhere else.
Sometimes where you stand depends on where you sit.
TPD Anonymous here.
It is partially an existential issue you are discussing. It is like a person up a tree, hanging from a branch by his mouth. His hands can’t grasp a bough, his feet won’t reach one. Under the tree there is another person, who asked him the meaning of Daruma’s coming from the West? (i.e. who and what we are.) If he doesn’t answer, he evades his duty. If he answers, he will lose his life. What should he do?
My Zen teacher answers like this:
Our life keeps giving us circumstances, sometimes requiring us ... to respond to seemingly impossible conditions, illness, pain, suffering of those close to us, etc. Hanging from the tree is impossible if we think it out in reasoned terms. If you say anything, aahh, you lose your life. .... But if you don’t answer, you evade your duty - even more, you evade your life, lose your life. See, hanging onto habits and living out of habits, mental, emotional, physical, all the ways we avoid who we are, when we do this we really lose our life, even though we think we are saving our self. Despite the fact that we can’t avoid it, we manage somehow to miss our life. So Kyogen's question is being tough, expressing this in very stark, straightforward circumstances.
So we have to answer the question at the time--the doctors, the parents, based on the circumstances, on what resources are available at the time, in the place where we are at.
There is not a simple 1-to-1 cause/effect beween the money saved on one infant and the saving of hundreds of people in third world countries (or the feeding of kids free lunches at school). I think that's something everyone gets and also the complexities of the reasons why people are dying worldwide in truly appalling conditions.
Recently there was some research published about conditions actually becomming worse as private charities upped their spending and influence to solve problems in Africa. Complex. Withholding treatment for one child that is savable, even if the money that would've been spent is sent directly to an organization committed to solving a public health crisis, is immoral.
On the other hand, I personally agree with the general notion of limiting an individual's rights to prevent them from acting in a way that will harm others. I would support extending that notion to health care policy in this country. A government-sponsored health care system, for example, in which benefits were more equitably distributed to ensure that everyone had access to some care. One consequence of that might be that a doctor is standing there over a premature infant, without the resources to offer extraordinary care.
Just some random thoughts.
Someone wrote, "Instead of the “profit” covering unprofitable areas of a hospital, it could be used to further improve neonatal care."
Unfortunately, this is the way things work. The loss of the money coming in from neonatology, cardiology, and GI, which are the procedure heavy areas of pediatric medicine, would mean losing things like infectious disease and neurology at many academic facilities.
When my 24 weeker was born, the doctors were very clear about his poor chances of survival. They filled my husband and I in on all of the potential problems he could face in life. It was up to us to determine the course of action- let the NICU team do what they do best, and try to keep our tiny miracle alive, or let him go. We chose to do everything possible to keep him alive. He was the baby I had been dreaming of for 8 years. He was my child, and even if he only lived for a day, I wanted to give him every possible chance.
Zackary turned 3 years old in January, and despite his rough beginning in life, you would never know he was a preemie. He is the picture of health, and has no long term problems because of his prematurity. We were so very lucky. It breaks my heart to even consider my life without him, but if somebody else had been allowed to make that choice for me, I am sure he would not be here.
As a former preemie who was once subject to such ethical debates, here's my take on it: if "the good of the many" was placed above "the good of the individual", I would not be alive today. I can state that unequivocably because I heard about that precise argument from more than one of my former physicians. Had the people who had this philosophy or some form of it (known personally as a case of "why spend the money when she's doing to die or be severely handicapped anyway") prevailed, I would be a statistic rather than a functional person.
Can't say I would ever buy the "you could help so many more with all that money" argument, because we are a nation that wastes our money in far more useless ways than preserving the lives of preemies. Take the money from other, far more frivolous places before you use that argument, IMHO.
Of course, my biases are showing clearly, but that's what happens when you're "close" to a question.
As a member of the "third world" I have a very strong negative emotional reaction to the idea of spending millions of dollars on saving the life of one extremely sick child. That's enough money to feed all of the poverty stricken children in my city for a month or more.
On the other hand, I find it very difficult to say that your child must not be given treatment so that the money can be used to save someone else's life. The idea of valuing the many over the few to this extent has some very unpleasant side effects, reminiscent of Stalin's Russia.
Ultimately, if you want to live in a capitalist society, this is the reality that we face. Market forces dictate reality. I don't know about anyone else, but I'm not ready to live in a communist society, and I certainly wouldn't recommend it to anyone else. We've been down that road and it ended badly.
In the US we like to talk about democracy. But our government is a representative republic, not a democracy. A democracy is government of the masses. The needs of the majority are met while those of individuals are often ignored.
A republic government, on the other hand, governs by the rule of law. Individuals vote for elected officials who represent them under a constitution. This form of government recognizes individual rights.
I have a couple of biases I must state. I am a nurse, my ten year old preemie was a micropreemie, and I have a diagnosis recognized by the National Organization for Rare Disorders.
Huge resources are needed to support initial, as well as long term, consequences of premature births. Significant resources are also needed to support those of us with other chronic illnesses. The argument of putting the needs of the many ahead of those of the individual could be expanded to further limit cancer treatment, medical research for rare disorders, special education services, etc.
My preemie daughter was born suddenly. We didn't have the time to think about what we would do. She was 15 oz at birth and had no amniotic fluid. She did not escape prematurity without consequence. She did, though, have a remarkably good outcome considering the circumstances of her birth. You couldn't pick her out of a picture as a preemie. Her medical expenses continue but, ironically, it's not her prematurity that is expensive. It's the neurological disorder she shares with her brother that is so costly.
Long term, is ignoring the needs of individuals good for the whole? These children are people and their lives are precious.
My life is also precious. I don't feel bad at all about all the money that has been spent on my medical expenses. This has been a substantial amount this year alone.
I, personally, would not want a governmental entity making more decisions for my family than they do already. I certainly don't trust the government to make reasoned, ethical decisions.
Laura
Could you imagine a world with Stevie Wonder, Mark Twain or even Albert Einstein? They are famous preemies. Just a thought.
-Tammy-
oops! It should have read:
Could you imagine a world WITHOUT Stevie Wonder, Mark Twain or Albert Einstein? They are famous preemies. Just a thought.
-Tammy-
I'd like to respond to Dr. Clay and Dee, who both imply that we really cannot change the status quo of our medical institutions. Dr. Clay suggests that we shouldn't wish away the profits that neonatology earns because it supports other less profitable sectors in the hospital like infectious diseases. I would respond that there is another way.
We could have a social net that supports hospitals in such a way that they do not have to push unnecessary but profitable treatments like CT scans or cardiac stents on far more patients than actually benefit from them. For a scathing portrayal of the lack of evidence based medicine that results when profit not science drives medical and hospital practices, see Shannon Brownlee's book, Overtreated.
Many European countries have less profitable neonatology or radiology departments, but this does not mean they have no infectious disease departments because the state underwrites the difference each department earns.
As for dee's implication that in a capitalist country individuals always have the last word, there are other capitalist countries where the good of ALL individuals matters in a way that is not true in the US. In Europe, a baseline of wealth, quality of life, and health is allotted to all in a way that seems impossible in this country. But it only appears impossible from our present vantage point---when Medicare and Medicaid were created in the 1960's a different medical system seemed possible.
Let us hope that our current health care crisis presents a new chance to rethink health care in this county. And this would include the need for more evidence based practices in fields such as neonatology and obstetrics.
Finally to respond directly to the dilemma Chris posed, I think it is far easier to imagine the state making decisions about withholding care when it concerns wards of the state (ie. preemies who have been abandoned or placed in foster care). I feel quite uncomfortable about top down, state interference in other cases, ie. preemies who have surrogates/parents in place making decisions. I agree with Helen that those parents and surrogates need to be better informed and more empowered than at present to make the best decision possible for themselves and their children.
**As a member of the "third world" I have a very strong negative emotional reaction to the idea of spending millions of dollars on saving the life of one extremely sick child. That's enough money to feed all of the poverty stricken children in my city for a month or more.**
I do see and understand what you are saying, but from a mother whose only child was premature it is a hard pill to swallow to think that somewhere out there there are some who may eventually rationalize this argument..If you were to take the money spent on saving one preemies life and put it towards feeding a poverty stricken city, the problem is still going to be there the next month, they are still going to continue reproducing knowing that they can not afford the children they already have. The same goes for people with aids, sure money can be put towards finding a cure for aids but undoubtedly while money is being funded for research there is yet another human subjecting themselves to the disease. I find that a lot of the situations that are being discussed here are self induced, people choose to keep bringing children into this world knowing they don't have the means to support them, they don't have ins, they don't have a job, they won't be able to get their children vaccinated..People continue to sleep with a different partner every day, continue to use dirty needles and sadly a lot end up with aids ( i know there are times when a person contracts the aids virus and it was not b/c of any of the situations i mentioned )Then you have this mother and father who did everything right from the moment they found out they were pg, she ate right, she watched her caffiene intake, she didn't eat blue cheese, no tuna, didn't eat fish, went to all her prenatal appts...and she goes into preterm labor and has her child at 26 wks..You see the difference here is this mother did not choose the situation presented before her, she had no choice as opposed to the ones who are choosing to put themselves in the situation that they are in..I think it's a hard thought for me to even think of when it comes to someone one day deciding that saving a preemies life is money that could be spent elsewhere..My child means the world to me and it literally makes me feel sick to my stomach to think that one day a mother may be denied the chance to take her child home with her if enough support this *theory* of where else this large amount of money can be spent..There is no value on a childs life..By the way I like the way the discussion has went so far..
Just in case anyone misinterpreted what I was saying: I don't think there is a good argument for withholding treatment in order to benefit others. The greater moral issues that that approach raises effectively rule it out, in my opinion.
On the other hand, I do think that a move towards a healthcare system more like that of some European countries would be very positive. I I can't really comment on your healthcare system though.
To Kellar's Mommy and 23 Weeks Twins Mommy: I really don't like the implication that poor people are having children they can't afford deliberately. Perhaps its not meant in this way, but it sounds incredibly judgemental, and ignorant of the realities of both the inner cities and the third world.
Again, I can't speak for your country, but I can promise you women here are not having babies they can't afford intentionally. Lack of access to contraception, cultural barriers against the use of contraception, unequal power relations in which women are denied contraception by husbands/boyfriends, an incredibly high rate of rape, a social need to have children in order that they will support you in your old age... the list goes on.
I realise that this is now off-topic, but I really feel it is important that people understand that it is much more complex than it might appear at first.
Dee,
I was actually referring to the United States. Notice I'm talking about families who *choose* not to work and continue to have children.
It's hitting on the argument that as tax payers we pay for many other things that I find to be more *unfair* than paying to save a child's life.
But my example is also an ethical dilemma because as a society we must support and care for these children. Do I disagree with housing, free lunch, free heakthcare?...no. But there is a dilemma in our welfare system here in the US, and as much as it probably bothers *some* that their tax dollars go to supporting the lives of preemies, it bothers others that while we work and pay our taxes, others choose not to but yet reap the benefits.
I didn't touch on the third world country aspect and instead am talking about purposely "living off the system" here in the US. Sorry if you misinterpreted.
What about long term care? The debate should not stop at the NICU. Most preemies need therapy well into school age, but there never seems to be enough to go around. Not to mention, if the therapy occurs at school, they miss class time.
It seems to me that children without an able parent need an advocate to insure the coordination of long term care. For example, what is needed, how to get it and transportation. I really don't think it is fair to save a child in the NICU only to neglect him/her long term.
The arguments presented make some sense if we assume that the existing government is the decision-maker and decisions are based on economics.
But what if the decision-makers are the members of the hospital medical ethics boards, whose decisions are based on ethical principles, rather than on economic considerations?
For example: Based on scientific studies and the statistics gathered from these studies, the Smith baby, born at 24 weeks, has a poor prognosis. It is the recommendation of the ethics board that the resources that would have been devoted to baby Smith be redirected to funding basic health care at the well-baby clinic downtown for 6 weeks. (Via a complicated restructuring of the insurance industry.)
Baby Smith will be provided comfort care.
This recommendation is based on ethical principle of weighing benefit against risk (beneficence).
There seems to be a clearer benefit to more children if the clinic is supported. The benefit to baby Smith is less clear--that is, she may survive, but has a high probability of lifelong morbidity and disability.
In addition, the ethicists view NICU care of a 24-weeker as "heroic measures" which are not required.
Chris and Vic
medrecgal said...
"Can't say I would ever buy the "you could help so many more with all that money" argument, because we are a nation that wastes our money in far more useless ways than preserving the lives of preemies. Take the money from other, far more frivolous places before you use that argument, IMHO."
I totally agree! We are a wasteful nation. If politicians would ever do what is right for our country, instead of what is right for their bank accounts, we wouldn't be facing so many economic dilemmas today.
Additionally, HMO's make decicions about who can receive what kind of care, on a regular basis. When we hear on the news about somebody being denied a potentially life-saving procedure, because of the money hungry HMO, we get angry and ask "Who are they to choose for that person?" The choice to save a preemie is no different.
I am saying in general that there are several people who continue to have babies but can not afford it. I used your example b/c you were the first who actually presented the fact that the money on saving a preemie could feed a poverty stricken city where you live for a month..And while there may be lack of access to contraception again *I* don't feel that is a valuable excuse, to me that is along the same lines as my cousin who knew she was out of her birth control and decided to be intimate regardless and now is pg w/her 2nd child at 20 years old, jmo though. Rape is a totally different thing though, I realize that rape happens to people and there a lot of pregnancies that occur as a result of this. Having children b/c you want someone to take care of you when you are older, again I am not sure that I can say that this would make sense to *me* given the situation that is going on. But it's not just in a 3rd world country that this goes on as 23twinsmommy pointed out, it happens here as well..I know of a family that has 5 kids and NEITHER parent works, they have no electricity nor running water, they go to his fathers house to eat and shower yet they say that they will continue to have children as long as god lets them, this is what bothers me. If you know you can not put food on the table stop having *relations*, if you cant afford or don't have access to contraception stop having *relations*, I don't think anyones life is going to be shortened b/c they are not having *relations*..
Wow. Where to begin?
Back story: I gave birth to twin sons at 28 weeks due to unexplained pPROM at 26 weeks. DH and I are not wealthy by any measure, but we had good jobs, insurance, etc., and paid for IVF (because we could not afford adoption... but that's another ethical debate). We chose to "limit" our embryo transfer, because we knew somewhat of the preemie risk with multiples. I had a healthy pregnancy in which I continued to work.
Within a few days of the boys' birth, DH lost his job (& couldn't get unemployment), I found my job had misrepresented and I didn't have disability; we had to decide whether to continue life-support on my firstborn (sepsis, dual grade IV IVH, hydrocephalus, collapsed lung--) and how to continue care for his brother.
Let's forget for a moment that though I think we're fairly intelligent folks, and had a close relationship with both of the doctors who managed my care, NO ONE had a serious discussion with us on what could go wrong.
Ask me *before* how I'd feel about my tax dollars going to help anonymous, "might-not-live" preemies and ask me *now.*
Ask me if I'd want "the community" to clinically, unilaterally make the decision to "release" my child (anyone familiar with the book, _The Giver_?).
Ask me if I thought I'd be one of "those women" waiting at the local City clinic with the teenage moms, or counting the days 'til my son's SSI check arrives.
There are never easy answers, but I am so glad we are discussing this. Someone needs to...
I'd always been of the mindset that we live in a free society, but one makes their own way; I totally bought into the "pull-yourself-up-
by-the-bootstraps" philosophy. I resented the thought of paying for others' problems --especially if I didn't agree with their ethical position.
What a pompous fool.
--And yet, at what point do we draw the line?!
I think what I resent now is the fact that --as medrecgal pointed out-- our society wastes money on such useless things! It seems to me that healthcare and education are consistently ranked low in importance. I agree, we are facing serious fiscal problems reminiscent of the 1930s; where is the prioritization? We've become a plutocracy rather than a democracy.
I like the idea of "benefits being more equitably distributed," but who would define that?
BTW, this is great.
I think Chris and Vic makes a good argument on the beneficence side of things. If you are looking at the major principles of medical ethics (beneficence, non-maleficence, justice, autonomy, informed consent) the problem is that you need to decide which principle/principles are most important.
On the side of justice, it is ethical to deny care to a preemie in order to better distribute healthcare resources. On the other hand, if you are arguing from the side of autonomy, parents or other proxy decision makers have the absolute right to choose.
The issues of beneficence and non-maleficence (do no harm) are pretty gray as far as prematurity is concerned.
I think the biggest problem in all of this is that we tend to fall so short on the informed consent portion, that parents aren't really very well equipped to exercise their autonomy.
Just my 2 cents, if we're looking at this from a strict ethics perspective. This is a case study that would have had my medical ethics class all tied in knots!
-Kristie
Helen Harrison to Chris and Vic:
It should be noted that the hypothetical situation of a 24 week baby not being treated (by decision of an ethics committee) is *very* far removed from the current reality in the US where babies are treated aggressively down to (and sometimes below) 23 weeks gestational age in most hospitals.
Parents get no say, until the infant appears to be dying despite treatment...then they *may* be brought in to ratify the inevitable. If they choose to insist on treatment for such a moribund newborn, their wishes are generally honored.
Here' a more likely current scenario: Baby Girl Miller, a severely distressed 23 week baby whom the parents, under advice from their obstetrician, did not want resuscitated, is resuscitated anyway over the parents objections after the hospital administators discover the parents' well-insured financial status. The child survives and is profoundly handicapped.
The parents win a jury award for the violation, by the hospital, of their right to informed consent. The jury verdict is overturned by a three judge panel, one of whom was being considered for the Supreme Court by the right-to-life-at-all-costs Bush administration.
[a true story]
Or let's consider the situation of a large, for-profit corportion listed on the NYSE which controls a large portion of the staffing of neonatal units in the US. It says it is committed to its "patients" but it is also committed to making profits for its shareholders...(and sometimes, it is alleged, siphoning off those profits to a few of its officers in the form of back-dated stock options -- the SEC is investigating). The corporation is also the target of Medicaid fraud investigations in several states.
Stock analysts currently rate this company as a "buy."
I wonder how such a corporation might react to an opinion from ethicists that it withhold care from a profitable segment of its patient base -- <26 week gestation infants?
Helen
Great points Helen. I wish I knew the name of the company but I guess you are not able to divulge. I agree that the social forces pushing for resuscitation seem much greater in the US than perhaps in Europe. And this may be one of many factors---I realize there are other factors involved such as the lack of antenatal care, etc.---in why the US ranks second to last among industrialized nations in terms of infant mortality. Save the Children reported in 2006 that America's infant mortality rate was tied with that of Slovakia, Malta, and Hungary. It also explains why more than 12% of all births are premature in the US, but only 9% in Germany for instance. A few percentage points mean tens of thousands of more preemies in the US, each of whom potentially can earn a hospital considerable revenue.
I have a comment one the HMO's and PPO's choice in your care.
I have 2 babies that spent time in the NICU and had diffrent insurance companies with them. With my older son our insurance paid 100% of all him medical care, we were in network with them and the hospital never said a word to me about them not coving this or that. When I got pregnant again, I was scared because the Children's hospital that is 10 mins. from my home is not on our plan (same hospital as before) My youngest was treansfered there and cared for with their highest level of care, somethings they did my insurance didn't cover a penny of, but they never came to me and said, "Your insurance won't pay how will you pay for this?" They did whatever it took and billed it to the insurance company then to me. He recived the same high level of care my older boy did no questions asked, and that is the way is should be. I don't think HMO's should make the call on ,any ones no matter the age, life.
My two cents is a little off track and probably overly simple compared to the rest...
When my daughter was born at 24 weeks, I was only told that she was "very sick". With Apgar scores of all 0's and a 1, I am still angered by that statement which presumed that I was too ignorant to fully appreciate the situation if given appropriate information. Even prior to that fatefull delivery, when reading "What to Expect..." and during my doctors visits, no one ever tried to educate me on how early a baby could be born and still live a "tolerable" life. So, I was completely uneducated and even when my daughter was born if someone had asked me if I wanted her to be resuscitated I would have told them to do everything possible to make sure she survived (although, no one asked me).
I believe that given the high rate of extreme premature birth, if more expectant parents were given in-depth education on choices that may have to be considered when facing a premature delivery, more parents may choose to not let a dying baby suffer. If we are talking about nothing else but money, giving the parents those choices would save money.
My daughter was also included in several double blind studies including glutamine in her TPN and a study for treatment of ROP. I have tried several times to find out about those studies which were done 8 years ago, however Stanford never answers me.
Having said all of that, if I would have been given the choice whether to recessitate my child, I probably would have chosen to make her comfortable and let her die peacefully. I grew up on a farm and have seen my share of suffering and had to make those tough choices. BUT, that would not have helped my situation. It breaks my heart to say that I would have chosen that for my daughter. Especially since she is now 8 and is as normal and probably more happy than any child could hope to be. In my situation, I am thankful that the staff at Stanford used their experience and knowledge to save my baby. If she currently had lingering and painful health/mental issues, I may feel differently.
I am , frankly, appalled at the way a great many poisonous comments about people in poverty have thus far been given a pass on this thread.
The implication has been that people in poverty and their children somehow deserve it, and that poor children are their parent's fault (they shouldn't have 'more kids than they know they can afford'.)
This is a horrible analogy, and has no place on this debate.
We live in a world characterized by inequity and resources that are either limited or unfairly controlled.
One could, for example, saythat any costs incurred by premature birth and consent to treat should be born solely by the parent, including special education and rehabilitation services, since 'they shouldn't have kids that they can't afford.'
However, that's a horribly punitive argument, utterly lacking in compassion, and most reasonable people would never make it.
I am , frankly, appalled at the way a great many poisonous comments about people in poverty have thus far been given a pass on this thread.
The implication has been that people in poverty and their children somehow deserve it, and that poor children are their parent's fault (they shouldn't have 'more kids than they know they can afford'.)
This is a horrible analogy, and has no place on this debate.
We live in a world characterized by inequity and resources that are either limited or unfairly controlled.
One could, for example, saythat any costs incurred by premature birth and consent to treat should be born solely by the parent, including special education and rehabilitation services, since 'they shouldn't have kids that they can't afford.'
However, that's a horribly punitive argument, utterly lacking in compassion, and most reasonable people would never make it.
Helen Harrison to Anonymous 1:51:
Thank you for saying what needed saying here!
A couple of additional points:
If all the children who could be saved or sustained in the third world/inner city -- were right here in front of us and we were looking them and their parents in the eye, it would be a much different conversation. We live in very narrow ("insular") worlds to protect ourselves from these realities (and the sacrifices we might feel compelled to make if we became too emotionally involved with other peoples' suffering).
I personally feel that there are many luxuries that we should be giving up to help such people before limiting parents' decisions in the NICU. But, you make a terrific point.
If someone says s/he doesn't want to pay for children, whose parents s/he castigates for taking on an irresponsible and untenable burden... and...if this same person then opts for aggressive care for their own marginally viable preemie (contrary to medical advice) but can't afford to take care this preemie for life (as will be the case in the majority of cases
<26 weeks) ...but this person then expects, in fact demands, societal support... well...
Many characterizations of this person's position come to mind, but I will keep them to myself.
Helen
In response to anonymous, March
30, 1:50,who is appalled at the poisonous statements about people in poverty . . .
It is my observation that if one stays "Insular," one insulates and isolates oneself from one's fellow compatriots, thus giving oneself a pass to feel and act
entitled, more than one's fellows;
angry, if someone else gets something we feel that didn't earn or deserve.
And we allow ourselves to feel this way in the name of an ethical principle, no less, that of fairness or justice.
But anonymous is correct, I think, in saying that poverty is complicated, brought on by inequalities woven into the fabric of our insular society. AND, the children of poor parents did not choose poverty or indigence. Indeed, the parents did not choose it, either. And living on welfare is subsistence living. It is not Easy Street by any stretch of the imagination . . .
If we had feelings for the common good, which is precisely the root of my ethical question, we would feel a common bond with all. We would wish for everyone's equal opportunity and equal welfare. Providing for the preemie of a poor woman would be the same as providing for the preemie of a middle class or rich woman.
In fairness, however, I think those who object to welfare were stating that redistribution monies could be taken from other coffers (such as welfare programs and fountain of youth expenses paid by insurance)rather than limiting the care of 24-week-preemies.
Good point: If we all had to pay out of our own pockets, directly, for our preemie's cares, then and now, probably very few could do so.
I'd bet that very few of us even keep a running total of how much it costs (if we are only talking about dollars and cents) to pay the medical bills from the NICU, subsequent medical bills, and educational costs. Truly, "society" is paying for our preemies, perhaps more than we know. We are all the recipients of that kind of welfare.
Though Stacy has asked that we leave our deity at the door, I cannot resist proposing that we have values and ideals for our society, not just for our individual selves. Even without mention of a deity, there is an icon in New York, on Ellis Island. She says "Give me your tired, your poor, your huddled masses yearning to breathe free; the wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me. I lift my lamp beside the golden door . . ."
Chris and Vic
To clarify --just in case-- I was saying that now having been in the situation of making critical choices about my preemie(s), and being in a position of relying on others, has opened my eyes to my own prejudices; I'm ashamed of my prior thinking.
But, I'm sad to say, isn't that true for most? (that it takes really walking in another's shoes to change a long-held view?)
"If we had feelings for the common good... we would feel a common bond with all... equal opportunity and equal welfare."
Precisely.
It will be very interesting when our school-aged preemies are old enough to comment on the fact that we actually had conversations about whether we spent too much money on saving their life. Some of our preemies are old enough to understand what we are talking about. How do they feel about this?
I'm not being difficult, just stating the reality of our conversation. I don't remember my parents ever having to talk about this in regards to their children.
Anonymous 1:51 - Thank you for your comments.
It really bothers me how much most Americans misunderstand the basic realities of the rest of the world.
Many of you here wouldn't even consider my country (South Africa) to be "third world" and yet within my own city there are tens (possibly hundreds) of thousands of men, women, and children living in poverty beyond anything you have ever seen in your country.
This is now maybe getting off topic, but the point is that the US is one of the most insular and ignorant societies around. This is not a criticism of the people posting here - it is a criticism of the society in general.
I'm not expecting a handout from America or Europe to sort our problems out - but some understanding would really be appreciated. I don't expect people to give up their needs in order to provide for the needs of strangers - nor do I think that such an approach is morally justifiable - but I do think that the "first world" needs to re-examine its priorities, and really start to address the inequities the world faces.
I know this may be really reaching and get me some flames, but I am going to throw it out there anyway...
How many preemies or other medically fragile people can we save for what this war we are involved in has cost us?
Our priorities in this society are WAY out of whack and saving medically fragile people is WAY down the list of wasteful things we do with our resources as a society (in my not so humble opinion). :-)
You are right, I don't live in a third world country. I have not seen first hand the conditions that people have to live in on a daily basis. There is no way around that. However, I am still a "good person" and so is my preemie child. I want what is best for children in all countries. Just because they have not had to suffer the same, does not devalue their life experience. I will not apologize for living where I live. I am very thankful and would like for all countries to have the same standard of care. I would also like to point out that America is also a very charitable nation.
If it makes you feel any better, I do feel guilty. Even though my husband works two jobs to support our family, and I stay at home with the kids and go to college (no one in my family has ever had the money to finish college), I try to have a global conscience. Which means that even though not everything is handed to me just because I'm American, I have to feel bad anyway because what I have is misrepresented as just being "handed to me". The "first world" Americans you see on TV do not represent the reality of working-class America.
We were talking about preemies and money...Not American money.
Hey, Aiden's mom, I'm with you--if we were seriously going to redistribute scarce resources (and be more responsible about running up more and more national debt), I would take the money from the war.
That may turn into a whole tangential discussion . . . let us not lose sight of "the good of the many balanced with the good of the individual" and the FACT that we are insular, insulated from the poverty and suffering of others.
Chris and Vic
In defense of my example of how our current welfare system is a dilemma, I want to clarify. Poverty is extremely complex, even here in our industrialized nation. I am not coming close to saying as a society we shouldn't support children whose parents are unable. My example was again about those who choose not to work. As a tax payer I can think of many ways to recreate our welfare system to help those who need it and to encourage those who are able to work to get the education, training, or experience they need to support their families. My example was only to show that as a society we as tax payers take on the burdens of our peers. Some may have difficulty "paying" for micropreemies and believe there is a way to recreate the healthcare and hospital policies, as others would like to recreate the welfare system, education system, etc so that resources are given to aid parents in the support of their children. I don't know how many of you work in social services or with the impoverished, but the system is flawed and I personally would rather see my tax dollars spent really helping those who need it and not making it so easy to live off the system. And at least in my state, it is extremely easy to do.
I don't want to get off topic, but the point is our system is flawed in many ways. As tax payers we pay for a lot that isn't "fair." But just because the disability rate is high for preemies I do not believe this justifies not spending money to save their lives. And just because our current welfare system is flawed this doesn't mean we don't support children or become like communist China where each family is allowed only one child.
I believe there can be solutions to both of these examples that do not involve what I see as extreme.
TPD here.
"It will be very interesting when our school-aged preemies are old enough to comment on the fact that we actually had conversations about whether we spent too much money on saving their life. Some of our preemies are old enough to understand what we are talking about. How do they feel about this?"
I made the same remark in the comment section a few blog entries back (though you stated it in much more diplomatic terms). It isn't just the money being spoken about. Often parents hold up their own living children as examples of the suffering that they should have been permitted to extinguish in the NICU. The family Helen posted about sued under the theory of "wrongful life." The child was part of the proceedings.
It must be some feeling to know your parents wanted you dead and instead you lived against their wishes.
An interesting point...
On our NICU wall there was a family story about an 18 year old girl who was a former 23 weeker. Her twin brother had passed a day after his birth, but she had survived. It talked about her brain bleed and narrowly avoiding a shunt. It spoke about her mild CP and also her many accomplishments. Her mother was writing to tell the NICU that she was heading to college that fall. I wonder what she, and other older former micropreemies would have to say about this discussion.
Again, it is going to come down to outcomes; which again highlights the varying degree micropreemies face...ethical dilemma after ethical dilemma...
From Helen Harrison
To TPD and 23 week twins mommy:
It is only (in my experience) those parents whose children are so severely impaired that they could never understand what we say, who explicitly, honestly, state they feel their children's survival was not for the best.
However...many other families secretly feel this way, and would say the same things in public that they often say in private, if they could be sure it would not cause further pain to their child.
No one wants to cause their child pain, and some of us, looking back feel the pain caused by NICU care and its aftermath was so much worse than anything we could say or think, and that our children, if they could speak, would agree with us.
We would like to support future families who also hope to spare their children, and themselves, this pain.
Helen
Anonymous 1:51,
I also thank you for your comments. What if the question was, "Would you support diverting the money that would be spent on preemies to pregnant women in third world countries with a high infant/maternal mortality rate?"
The United States is one of the few countries that even has a significant number of preemies. If you go with the argument, "I don't want the community deciding if my child lives or dies", then wouldn't you be doing the same thing for the women that would have given birth to a healthy full term infant in the third world country, but had complications and died?
I do want to say, however, that I understand why people feel the way they do. It's easy to say that you want your own child to live when you don't live with the starving children or people with malaria.
In response to "The one that could save thousands." I don't like it when people talk about the hypothetical to justify their beliefs. The saving thousands is real. They already exist. Using that to justify saving one preemie in my opinion is very weak.
I usually don't like answering questions like this because in real life, it's never as simple as, "Money will be taken away for cause X and put into cause Y," which is not true.
Helen,
I was referring to this point:
"It will be very interesting when our school-aged preemies are old enough to comment on the fact that we actually had conversations about whether we spent too much money on saving their life. Some of our preemies are old enough to understand what we are talking about. How do they feel about this?"
But you bring up an important point that I stated earlier.
You say,
"It is only (in my experience) those parents whose children are so severely impaired that they could never understand what we say, who explicitly, honestly, state they feel their children's survival was not for the best."
I believe you are absolutely correct.
However, there are school aged preemies not too disabled to comprehend these types of discussions. These discussions are not limited to severely impaired preemies; Insular is discussing the ethical nature of millions being spent on single lives versus the possibility that it could be better spent somewhere else.
The larger moral and ethical dilemma is we can't single out the preemies who will go on to articulate how they feel about these conversations and those who are unable.
If there was evidence that all babies born under 26 weeks went on to live lives of suffering and pain, who 100% of parents felt their lives were too painful and they should have been allowed to die, then there would be little need to discuss such ethical issues. However, we know this is not the case and therefore, unless the ethics board figures out something that research has yet to discover, I can't see how we can have a group of people making decisions about life or death of another's chid based on what could potentially occur in the long term, even if it does save money.
As of now, in my experience locally, ethics boards do not decide. They make recommendations.
Maybe, in the future, we could consider giving them more power, in the belief that ethics boards, with trained ethicists sitting on them, would make better decisions than government. Who knows.
IF any authority made decisions that supplanted individual parents' decisions for their individual child, those decisions would be made based on laws of probability and statistics, which would be melded together with the application of ethical principles--autonomy, beneficence, nonmaleficence, etc.
For example, baby Smith, the 24-weeker's case, would have to "pass" standards related to the ethical principles AND the laws of probability and statistics, extrapolated, perhaps, from Vermont-Oxford Network data . . .
It would be a system like the appeals and Supreme Courts' system
--with arguments based on ethical (instead of legal) standards. In the beginning, quick decisions, made in the heat of the moment at the time of delivery, would not be possible. Only later, after several decisions had been handed down (and precedents set) could decisions be applied quickly at the time of delivery of an infant.
We function under rule of law in our society (as someone has pointed out). We could also function, in cases about cut-off points for preemies, by "rule of ethical principles".
Buddhist Mama, is there a precedent for this in other countries/cultures, that you know of?
Chris and Vic
This morning, a bioethicist was a guest on a public radio talk show. He was fielding questions from listeners regarding an 11-year-old girl in Wisconsin who died of undiagnosed diabetes. The child's parents 1) have had their other children removed from their home; and 2) may face charges of child neglect/abuse for not seeking medical treatment for their child as she grew more gravely ill. In place of medical treatment, the parents prayed for healing, per their religious convictions.
The central issues is easy to debate--religious freedom vs child abuse/negelect. Not so different from religious groups which refuse blood transfusions, etc. Indeed, there was a spirited debate on the radio, even if it was one-sided (against the parents' actions).
But here is what bothered me--that the ethicist did NOT name and refer to his guidelines as an ethicist--autonomy, beneficece, nonmalfeasence. If he had done so, he would have brought the discussion to a more sophisticated level---much like the higher-level discussion we are now having on Stacy's blog. He would have educated listeners about how to "measure" situations that are ambiguous and thorny.
Instead, those who responded did so from sheer emotion. Sheer gut emotional response is not enough. You need standards that dispassionately weigh risk against benefit, address the meaning of doing no harm, and preserve autonomy. Even to say "That is not fair," like we did as children, is too vague. There need to be standards, dispassionate standards.
Those of us who live out thorny ethical issues, one after another, with our ex-preemies (as someone said), need to both feel in our guts AND think/analyze dispassionately, by ethical standards.
That is the reasoning behind putting forth ethical posts/discussions on this blog. To train ourselves in ethics, in being dispassionate, and in this case, to challenge ourselves to think globally--rather than remaining insular. We already know how to feel from our guts. We need to learn the ethics piece. IMO.
Chris and Vic
TPD here.
What about the elderly that have strokes or develop Alzheimer's. They often cannot speak; we often do not know their level of comprehension. It is hugely expensive to care for our aging population and most of them did not plan as well as they could and did not purchase long-term care insurance or amass a small fortune to pay for years upon years of round-the-clock care. They have had an opportunity to live their lives. They don't have 50% odds of being "normal" - they have 100% odds of major disability and will be dead within 10 years. Why not take the money that would be saved on one Alzheimer's patient without insurance or the means to pay, or on one uninsured stroke victim, and send it to the NICUs? Their families would be burdened physically and emotionally having to care for them, and they would certainly suffer. If they have other medical problems, why spend the money on painful surgeries, drugs, and therapies. Besides the untold suffering the patients would endure and the negative family impact, the probablility of them being alive and healthy in 20 years is 0.
If you campaign ceaselessly on behalf of family rights to informed consent to get the word out to the medical community that they are being irresponsible in saving these folks, that would also be a good idea. Especially if you have a living relative who would've been let go by applying the new ethical standards. But only if that relative is unable to speak, and presumably unable to comprehend what you're advocating.
Of course I am not serious...
I also have excellent statistics to prove that by age 100, 99%+ of patients that would be affected by these eithical guidelines will be dead, after catastrophic failure major organ systems. This is borne out by extensive, published research dating back centuries. Can't we all simply agree based on this overwhelming evidence that we should let an ethics board or the community vote on whether or not it's economically feasible to medically intervene to save grandma if she has a stroke at age 65?
To appalled:
I in no way feel that anyone deserves poverty or that they ( the parents ) chose poverty, I do however feel that if you are barely able to make ends meet yourself then bringing a baby into the picture is not the smartest thing to do, again I believe this happens here in "first world" as well, in fact I know it does, I see it on a daily basis. I do feel sorry for the kids, I am not against helping one in need and yes if I were to have had to carry the expenses of Kellars nicu bills I would be swimming in debt but since I am fairly sure if I were to get pg again I may possibly end up with another preemie so therefore I am NOT having anymore, providing for ONE is hard enough for me and I realize that..Do I believe that some ride the system yes I do and nothing will change my opinion, when you witness someone paying for food with food stamps then walk out the door and get into a Mercedes, something is wrong with that picture I do believe..When a mother is plenty capable of getting off her rear and getting a job but instead sits home and chooses to have 5 or 6 kids and not work, uhm yes they are using the system. I remember being in school and seeing the kids in the free lunch line wearing name brand clothes and shoes, did it look like there parents were riding the system and using it for all it's worth, yes.. I realize that there are situations where both parents work and they still aren't able to make ends meet, it's awful and not a situation where I would want to be in but again do I feel that having more children is helping the situation no *I* don't..Again I'm not saying that *ALL* parents on welfare or in poverty chose this for themselves, but I do believe that some chose to continue getting further and further into poverty by their own choice..
Many characterizations of this person's position come to mind, but I will keep them to myself.
maybe that was intended for me??
Ananymous 9:31--
End-of-life-decisions are increasingly guided by, among other issues, evidence-based practice, which looks at the statistics for various treatment outcomes.
In addition, the concept of 'futility', or the point at which treatment will have no meaningful impact on outcome, is often also considered in care recommendations for the adults and seniors who are catastrophically ill.
However, also considered as the aging population in the developed world both grows and grows healthier, evidence accumulates for a variety of interventions taht would have previously been thought 'too risky' for seniors, but in fact, have good outcomes when the evidence is examined.
As well, the cost-to benefit ratio for these are often unexpectedly positive.
A hip replacement for a 75-year-old, may, in the western world, assure 10 or more years of pain-free independence, or a much lower level of supportive care, drastically reducing healthcare costs.
In other words, your comment is based on unwarranted suppositions.
To anonymous 9:15
Unlike NICU care, the 'default setting' in most cases of advanced Alzheimer's/progressive dementia, is not 'do everything medically possible.'
Families are considered the proxy decision makers in practice, unless the person has specified in detail otherwise, and the option of comfort care only is almost always presented by the physician.
TPD here.
I'm not talking about hip replacements, obviously. What is comfort care for a physically healthy Alzheimer's patient, and how many people round-the-clock does it take to provide that, with *zero* possibility of improvement. No one that I know of is suggesting leaving the Alzheimer's patients to wander away and get hit on the road or not remind them to eat, to turn off the stove, to get them to the toilet, etc. That would be decried as genocide (or something like it without the racial/ethinic/nationality definition). Obviously horribly wrong. Also horribly wrong to try to subtly tell families that the afflicted would be better off left for dead, because of the huge amount of suffering involved for all.
Why is it that no one sees it as genocide to lump all <= 26 weekers into the same category???
I'm not using the term genocide to in any way diminish historic instances of genocide. I believe a term like this fits when one would try to put a arbitrary number on gestational age for resuscitation.
Helen Harrison to TPD who said:
"What about the elderly that have strokes or develop Alzheimer's. They often cannot speak; we often do not know their level of comprehension. It is hugely expensive to care for our aging population and most of them did not plan as well as they could and did not purchase long-term care insurance or amass a small fortune to pay for years upon years of round-the-clock care. They have had an opportunity to live their lives. They don't have 50% odds of being "normal" - they have 100% odds of major disability and will be dead within 10 years. "
I (mostly) agree with you on this one. I have known many elderly people -- including my parents -- who wished to die in dignity, and not suffer the pain and indignity of invasive treatment or dependency on caregivers in their declining years.
Most elderly people I speak with (and I am about to join their ranks) feel the same way. We really, really, really do NOT want this care. It is wrong for us, wrong for our families, and wrong for society as a whole.
I remember talking with an elder-rights patient advocate on a television program some years back. She was arguing to allow older people to opt out of aggressive measures at the end of life (living wills are all-too-often not honoered).
I was similarly arguing for allowing severely premature infants to be spared aggressive treatments if that was the wish of their well-informed parents.
The elder-rights advocate said to me, "The situations I'm talking about are bad (demented people being kept alive despite their expressed wishes), but the ones you are describing are even worse! In the case of the elderly we are talking about prolonging life a few months or, at most, a few years. The babies you are talking about will have an entire lifetime of varying degrees of dementia, disability, and medical interventions. Their families will be impacted forever, not just for a brief period at the end of an otherwise long and normal life."
I have to agree with her.
The statistics you quote
(<26 week preemies -- 50% "normal") need some further comment, however.
*All* preemies born at this stage of gestation have significant brain damage/abnormality -- the question is not *whether* they will be affected by it, but how severely affected will they be?
Fifty percent will meet the stringent definitions for severe handicap by age two, but *many* more will be sufficinetly disabled never to be able to live independently -- in other words: the majority will require similar life-long care to that of the demented elderly, only at much greater human and financial cost.
And ...preemies who have sustained the brain injuries typical of prematurity (all of <26 weekers, according to MRI studies) are at very high risk to develop Alzheimers (along with the other debilitating diseases of old age -- heart disease, strokes, diabetes) much earlier than normal.
That on top of everything else!
Helen
TPD here.
I feel like I've gone down the rabbit hole with Alice. I will have to check back when I have more time to write.
From Helen Harrison
To TPD who said:
"Why is it that no one sees it as genocide to lump all <= 26 weekers into the same category???.... I believe a term like this fits when one would try to put a arbitrary number on gestational age for resuscitation."
Twenty six weeks gestational age is not an arbitrary number. It is the point at which the "benefit" of treatment (in terms of relatively intact survival) begins to outweigh the risks and burdens[death despite treatment, survival with severe disability].
Below 26 weeks gestational age, the majority of children die despite treatment or survive with handicaps profound enough to be diagnosed by age 2. Treatment becomes far more painful below this age, and pain relief more problematic. Hospitalizations become much longer and more costly, complications and iatrogenic damage become much greater.
Babies born at or below 26 weeks also manifest a unique pattern of brain damage with proportionately greater brain tissue loss than is seen in older preemies (although older preemies have their share of problems as well!). Nature works this way, unfortunately, and there is not much we can do about it at this point.
That is why the AAP, ACOG, and numerous communities in the US (and abroad) consider the area below 26 weeks to be a "gray area" in which informed parents should be allowed to decide for or against resuscitation and treatment.
I wouldn't call it "genocide," I'd call it a compassionate recognition of a biological limit.
Helen
Hi Helen...
Who is keeping track of all of the relatively healthy micro-preemies? How are we to have fruitful conversations like this about money spent and quality of life when we don't have that information?
We mostly hear from the preemie families with issues severe enough to really affect their quality of life. How many are there like Sierra, who have needed some intervention at various stages in their growth but continue to enjoy their life as well as any child should. I know that for myself, I don't reach out for every good thing for every good preemie thing, only when something bad is happening and I need help.
Like we are talking about right now on Preemie-Child; no one has followed up on the healthy micro-preemies.
Helen Harrison to Wendy Singer who asked:
"Who is keeping track of all of the relatively healthy micro-preemies?"
There are a number of large studies in the US and around the world that are now looking at *all* preemies born in certain cohorts (some national cohorts, some hospital network cohorts).
In these studies all preemies of a certain gestational age group are followed, in some cases, to adulthood.
This is where most of the information comes from -- all preemies, not just some.
Helen
The problem for me is that I can discuss these matters in an academic way, but when the rubber hits the road, it loses meaning.
I think that the debate about where to draw the line with heroic measures for micropreemies is, for me, very similar to discussions about assisted reproductive technology. Here's why:
I can discuss how, as a society, we're spending a lot of money on assisted reproduction and in turn increasing the number of children in the next generation who are at risk of reproductive problems of their own, among other health concerns. It's an interesting dilemma, and our society hasn't done anything to grapple with the complexities. (Are we thwarting Mother Nature at our own peril, or for positive changes in society, such as older, better-educated mothers? And when it's costly, limiting access to those few who can afford it, what impact does that have?)
But show me an individual or couple who cannot conceive, and my heart will break for them. When the theoretical becomes personal, I'll of course want whatever is possible for that couple. I'd want a miracle for them.
In the same way, I can discuss in a rational way how, as a society, we should manage the costs (financial and health) of saving micropreemies, but it's completely removed from how I feel about any real, specific baby or family. Show me a real person, and I want the rare miracle for them.
That said, my take on Chris's question is that although it's interesting to discuss our society's values, and whether we put our collective money where our mouths are, but it's a pretty academic exercise. Unless we had a national health care system that was strapped for cash, there would never be a direct correlation between money spent on one baby and money spent to vaccinate thousands. (And, yes, our country wastes money on LOTS of things that are less noble than saving a medically fragile baby!)
I'm a little uncomfortable with medical staff going to heroic measures for a ward of the state, who doesn't have the family support necessary to raise a severely affected child. HOWEVER, I'm EXTREMELY uncomfortable with the idea that children would be treated differently depending on their family situations. So the answer must be for our health care system and society to do as good of a job at supporting these kids through life as it does at saving their lives to begin with, and giving parents the information and power to make their own choices.
As for the whole off-topic welfare thing, I can't help but throw in my two cents. Yes, there will always be people who will take advantage of the system. But, personally, I'm glad that that safety net is there. Not just because "there but for the grace of God go I," but because I believe in a society where we take care of the less fortunate.
Kathy,
Very well said.
buddhist mama,
This is perhaps a little late as the conversation has moved on, but my point regarding the use of profits from our NICU's was in reference to the comments asking for the funneling all of said profits back into neonatology research. I was not commenting on whether or not those profits are ill gained or just.
Wonderfully said, as always, Kathy. Thanks.
Kathy, I cannot decide which statement was wiser and more compassionate:
1)There but for the grace of God go I; or
2) Unless we have a universal healthcare system that is strapped for money, we will not change our approach (fair paraphrase?).
As far as #1, that statement is the exact statement that flew out of my mouth, unbidden and unanticipated, when I talked for the first time to Vic's birth mother. I was prepared to disapprove of her, even hate her, for what she'd done to her baby, but that is NOT what happened . . . She sounded like a person, similar to me. She sounded okay . . .
As for statement #2, I think we ARE strapped for money, on every front, but it isn't changing our approach. Our approach continues to be "We are ENTITLED . . ." and so we borrow and take on more debt in order to have the things we think we are entitled to. This on a personal and on a national level.
IMO
Chris and Vic
I think Kathy has done an amazing job articulating what I would have liked to say.
Very well said.
Helen Harrison posting here:
I'd like to interrupt the thread for a moment to bring you this announcement.
A study in the latest issue of Pediatrics shows that 26% of preemies born at less than 1500 grams are scoring positive for autism on screening tests by age 2.
****
From Pediatrics,Vol 121, April 2008
Positive Screening for Autism in Ex-preterm Infants: Prevalence and Risk Factors
Catherine Limperopoulos, PhDa,b, Haim Bassan, MDb, Nancy R. Sullivan, PhDc, Janet S. Soul, MDb, Richard L. Robertson, Jr, MDd, Marianne Moore, BA, RNb, Steven A. Ringer, MD, PhDe, Joseph J. Volpe, MDb and Adré J. du Plessis, MBChB, MPHb
a Department of Neurology and Neurosurgery, School of Physical and Occupational Therapy, and Department of Pediatrics, McGill University, Montreal, Quebec, Canada
b Fetal-Neonatal Neurology Research Program, Department of Neurology
c Developmental Medicine Center
d Department of Radiology, Children's Hospital Boston and Harvard Medical School, Boston, Massachusetts
e Department of Neonatology, Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts
OBJECTIVE. The survival of very low birth weight infants has increased markedly in recent years. Unfortunately, the prevalence of significant and lifelong motor, cognitive, and behavioral dysfunction has remained a major problem confronting these children. The objective of this study was to perform screening tests for early autistic features in children with a history of very low birth weight and to identify risk factors associated with a positive screening result.
METHODS. We studied 91 ex-preterm infants 1500 g at birth. Infants underwent conventional MRI studies at preterm and/or term-adjusted age. We collected pertinent demographic, prenatal, intrapartum, acute postnatal, and short-term outcome data for all infants. Follow-up assessments were performed at a mean age of 21.9 ± 4.7 months, using the Modified Checklist for Autism in Toddlers, the Vineland Adaptive Behavior Scale, and the Child Behavior Checklist.
RESULTS. Twenty-six percent of ex-preterm infants had a positive result on the autism screening tool. Abnormal scores correlated highly with internalizing behavioral problems on the Child Behavior Checklist and socialization and communication deficits on the Vineland Scales. Lower birth weight, gestational age, male gender, chorioamnionitis, acute intrapartum hemorrhage, illness severity on admission, and abnormal MRI studies were significantly associated with an abnormal autism screening score.
CONCLUSIONS. Early autistic behaviors seem to be an underrecognized feature of very low birth weight infants. The results from this study suggest that early screening for signs of autism may be warranted in this high-risk population followed by definitive autism testing in those with positive screening results.
****
Helen
correllation does not = causation. I wonder if something as-yet-unknown that contributes to autism also contributes to being a preemie. I wish there were more answers out there for what causes prematurity, autism at a basic level. We have a boatload of studies that sort metadata, and the possibilities for such studies are infinite (I guess there is "research" $$ out there for that, or maybe on-the-job $ or prestige).
Helen -
I saw that Pediatrics article yesterday, but couldn't access the full text (I've been dragging my feet on buying my own subscription . . .). So, thank you for including some of the discussion.
As far as correlation not equaling causation, that is true, but how much does that really matter in this case (other than the need for further research)? The point I took from the article was a need for more and earlier screening, regardless of the underlying cause of the autism.
-Kristie
From Helen Harrison
To Kristie:
I totally agree that "causation" issues are somewhat beside the point here, but anonymous made "the correlation does not equal causation" point, so I thought I'd attempt to address it.
This is not the only study, BTW, that is going to be showing this incidence of autism spectrum disorders in preemies.
While, I'm not at liberty to speak of the next study yet, it does involve older preemies, and strengthens the findings of the Pediatrics data.
I do have the Pediatrics article which I'd be glad to share with anyone who emails me at
Helen1144@aol.com
Helen
With all do respect, the rise in the rates of adhd, autism, autism spectrum disorders, bipolar, learning disabilities are up remarkably in full term babies. Take preemies out of the situation and the spike is still there. It's more than preemies surviving causing that problem. Could it be the pharmaceuticals in our drinking water or the antibiotics, steroids, pesticides, and preservatives in our food?
-Tammy-
To Tammy who said:
"With all do respect, the rise in the rates of adhd, autism, autism spectrum disorders, bipolar, learning disabilities are up remarkably in full term babies. Take preemies out of the situation and the spike is still there. It's more than preemies surviving causing that problem. Could it be the pharmaceuticals in our drinking water or the antibiotics, steroids, pesticides, and preservatives in our food?"
***
Or could it be steroids that are given prenatally to countless numbers of high risk women who then go on to deliver at term?
Steroids could be part of the problem both in preemies and fullterm babies.
Whatever the cause(s) turn out to be, the autism rate among preemies seems to be about 5 times higher than among term-born children, and that may be an underestimate.
We still do not know to what degree preemie survival contributes to the rise of autism because, as the authors of the study point out, the issue hasn't been looked at until now.
I'd love to see the autism, addh, learning disablilites, etc., children looked at in terms of gestational age at birth and NICU exposure. If you have any references with such a breakdown, please let me know.
Helen
I don't know if this idea has any merit, but someone (sorry, can't remember who) in the documentary _The Business of Being Born_) pointed out the correlation between the increase in labor-inducing drugs and the increase in autism. Of course, lots of other things have changed in our environment in the same time frame. Processed foods comes to mind, for instance.
But if medical interventions during birth can cause some glitches in the brain, well, the percentage of preemies born vaginally and drug-free is even lower than in the general population.
I thought the evidence was mounting for (at least some cases of) autism having a genetic component? Also, aren't study authors supposed to be somewhat neutral in opinion--finders of fact?
To anonymous 5:27:
Yes, there are cases of autism that are probably genetic in nature.
However, when large populations are studied, two patterns tend to emerge. In one pattern, families may have one or more offspring with autism and other family members with autism as well. These children probably come by their autism genetically. They are not preemies, usually.
Then there are families in which only one child, and no relative, has autism and that child was born prematurely.
I'm not sure what you mean about study authors being "neutral in opinion." At the beginning of every study and at the end there are comments and speculation giving the history of research into a given question, and then, what the current research plus the past research might mean. These call for speculation and opinion, but they are evidenced based.
Then there are follow up letters to the editor in which other researchers share their views and the authors respond.
This is standard.
Helen
Helen,
Thanks for the information... There are so many variables in regard to the autism spectrum --some mentioned by others above-- what about exposure to vaccinations? I know it's an entire subtopic, discussed endlessly in research papers and online posts, but what of premature babies' exposure?
DH and I went endlessly in circles about what vaccinations to do, when, considering "compromised immune system" and all.
I do believe there is a genetic correlation, as well.
This is why I could not be a research scientist: I think of possibilities too numerous to handle.
BTW, I don't buy into many pediatricians' assertions that the connection is purely anecdoctal.
Preemies are at an elevated risk for multiple illnesses and diseases. Why would Autism be any different? Wouldn’t it make sense that preemies’ rates of incidence of Autism be higher than full term babies since they are medically fragile and more susceptible?
We can not just look at children and correlate illnesses to them based only on their gestational age at birth, birth weight and NICU exposure without considering their family history and genetic dispositions and other possible exposures. I say this because of my own son, born at 24 weeks 6 days gestation weighing 1 lb. 12.9oz and had a NICU stay of 100 days. He currently at age 6 has dysgraphia. Stop your research there and you can correlate premature birth to this disorder. But what about this important fact: My two sisters each have a son with this same disorder. The girl cousins have been unaffected. Is my son’s dysgraphia caused by his premature birth or is it genetic? I guess it would depend on what theory the doctor is trying to prove. I believe studies are significant but we can not lose our common sense and deem their findings absolute or without flaw.
-Tammy-
I too am now hesitant about continuing with Kellars vaccinations, he is behind on them, not by my choice but for some reason his pedi has yet to send us a letter, but anyhow..I do on one hand think that it is something genetic, then on the other hand I'm not so sure what causes it..I know a lady that has 3 girls, 2 of them have autism, were not preemies and her 3rd just turned a year old and she feels that she is already showing signs of being autistic. I am not arguing the fact that autism in preemies is on the rise, but I agree that there are lots of kids that have been diagnosed with autism that were full term..
Helen Harrison says:
Another possible reason for the rise in autism is the widespread, fairly recent, practice of clamping umbilical cords immediately after birth (in both preemies and fullterm infants).
The rationale for this practice is, as I understand it, to prevent high bilirubin levels which might result from the "placental transfusion" -- blood from the placenta flowing into the newborn baby.
"Too many" red blood cells from such a placental transfusion might, obstetricians and neonatalogists reason, yield high bilirubin levels when the red blood cells disintegrate. But nature apparently "intended" for babies to get all this blood.
And the lack of placental blood that would normally flow to a newborn baby at delivery may impair bloodflow and oxygen to the brain. Preemies would be particularly vulnerable, because the amount of blood that is "too much" and the amount that is "too little" is *very* narrow, and no one is sure what is just right for these babies.
Additionally, one of the big risk factors the Pediatrics study found for autism symptoms at age 2 was intrapartum hemorrhage (such as in placental abruption).
There are some interesting sites on the Internet about early clamping of the cord and autism. I think this theory has more plausibility than the vaccine theories -- though I don't completely rule the vaccine theories out either (mercury is not good for anyone), but mercury has been removed from vaccines and the autism epidemic continues.
Helen
When I read some of these posts I realize with a start just how much my son is at risk.
It's such a balancing act: to differentiate between paranoia, "typical" first time parent concerns, and preemie issues. My mother says I'm 'looking for things to be wrong;' I would argue, but having lost one son, it's a fight to 'let go,' literally and figuratively.
While I agree with Tammy that research can be "skewed" to suit the viewpoint of the researcher, I believe that's all the more reason to support better science, more methodology; then we can discern between and come to valid conclusions.
To go way back to my freshman historiology class: History majors are forewarned that the topic is very subjective. It is the duty of the student to read varying accounts of the same event and come as close to the truth of what occured as possible.
Just a thought... of course, we can drive ourselves nuts that way, too.
http://www.quackwatch.com/03HealthPromotion/immu/autism.html
I would encourage everyone to read this before deciding whether or not to vaccinate their children. This is a very reputable website.
Also, remember, the plural of anecdote is anecdotes, not data.
I think this is something we should all bear in mind when looking at individuals with the intention (whether conscious or not) of generalising to a larger population.
Dee
I couldn't get the link to work..I am interested in reading the article...
I suspect Dee's link was:
http://www.quackwatch.org/
03HealthPromotion/
immu/autism.html
(You'll have to cut and paste all three lines.)
Ok, now we're TOTALLY off-topic, but for the NON-preemie spectrum population, I've been following this closely for a few years because of a dear friend's son. (The first baby born in my circle of friends has PPD-NOS, possibly Asperger's.)
It's quite clear that my friend's two sons have totally different abilities to handle stimuli, foods, vaccinations, you name it. Whether because of a genetics or their very different births, the differences have been there from day one.
My personal conviction is that if you take a predisposed, sensitive kid and give them anything that's a lot to handle, whether it be a vaccine or artificial food colorings, you're going to see symptoms. And if your baby is not predisposed to autism, vaccinations aren't going to "cause" autism, because their body and brain can handle the extra strain.
But I have absolutely no idea why so many preemies have autism-like symptoms, and why they really seem to be just autism-ISH, and don't fit the autism profile perfectly. They seem to have their own brain differences that share some qualities with the spectrum, but not all. What a mystery.
Sorry, I meant to type PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), not PPD-NOS.
What would PPD be? Pervasive Poopiness Disease? Perpetual Problem Disorder? Post Prematurity Drama? Hmmm... I'm going to start inventing official-sounding acronyms for all of the grief Claire gives me!
From Helen Harrison to Tammy, and to Kyrsten, who said:
"While I agree with Tammy that research can be "skewed" to suit the viewpoint of the researcher, I believe that's all the more reason to support better science, more methodology; then we can discern between and come to valid conclusions."
I'm not sure I understand what either of you is trying to say here, and I'm wondering if you can give some concrete examples pertaining to the autism screening study, if that was what you were referring to.
How, for example, is this research skewed to fit the viewpoint of the researcher?
Could you further explain what you mean by "BTW, I don't buy into many pediatricians' assertions that the connection is purely anecdoctal." Which connection?
What kind of methodology is it that you want more of?
What conclusions here, if any, do you consider not valid?
Helen
TPD here.
Helen, Obviously you believe that prematurity is a cause of autism, although from what you posted this study doesn't suggest that at all, it presented results that tallied autistic *behaviors* as indicated by screening test results. I did not read the study - was there a control group of full-term infants also screened for autistic behaviors? How were the screened infants identified? (if through NICU follow-up programs there would be expected to be a high percentage of more severe complications--otherwise many parents just don't return to the hospital).
If you read through the autism behavior checklist (I googled a sample one), lots of those behaviors are exhibited by non-autistic people. Dang, I am sick with a fever and stomach ache and if I read through a diagnostic manual and tally up symptoms I could be one symptom short of the plague.
I would like to see a neutral expert on "study design" comment on the strengths and limitations of the study.
TPD here. I just had an "aha!" moment. No wonder Brigham pushed us to get MRIs at six months after discharge. The neonatologist we saw is a study author. He couldn't articulate a decent reason for sedating my baby and having the MRI; I concluded that he was simply curious. Turns out that was the case.
Maybe someone should study whether having 2 brain MRIs within 2 years of birth is correlated to having autism...after all, 100% of the 26% of premature children studied did have at least 2 MRIs prior to age 3.
TPD, If I remember correctly, the kids in the autism and prematurity study were from a cohort that were enrolled in an MRI study while hey were in the NICU. They followed up with those 100 or so kids for this study, but a few had died, and a few couldn't be reached. As I recall, the kids had one MRI, in the NICU.
-Kristie
Another interesting autism correlation research: autism rose at rates that closely tracked cable subscriptions :
http://www.time.com/time/health/article/0,8599,1548682,00.html
that link again:
http://www.time.com/time/health
/article/0,8599,1548682,00.html
From Helen Harrison to TPD:
Kristie is right. The children in this study had only one MRI and that was in the NICU.
If your neonatologist wanted a second MRI on your child, it may have been because of something seen in the first scan that deserved follow-up.
I can't say that it was worth doing, but it was almost certainly not part of a formal study, unless you were given a consent form to sign agreeing to participate in the research.
***
You say: "Helen, Obviously you believe that prematurity is a cause of autism, although from what you posted this study doesn't suggest that at all, it presented results that tallied autistic *behaviors* as indicated by screening test results."
I believe what the evidence shows, and I clearly and correctly explained what this study shows.
Other evidence also shows a 3.5 to 5 times higher risk of autism among preemies or other babies who needed NICU care.
It is also hard for those of us who hear the frequent autism diagnoses on the "preemie-child" list to think that there is not a very strong connection between prematurity and autism.
***
You ask:
"I did not read the study - was there a control group of full-term infants also screened for autistic behaviors?"
Not in this study, because the question they were asking did not require it. The tests for autism screening in infants were designed by neurologists who specialize in autism and who would not release such a test if it gave huge numbers of false positives/negatives. I'm sure these tests have been given to *many* fullterm infants to validate them.
There will probably be *some* false positives, as well as some false negatives on any test given a 18-22 month old baby, but a 26% positive autism screen demands attention.
I know of more studies in the pipeline, looking at older preemies who are compared with term-born controls. The research will strengthen the findings of this study.
I am not at liberty to talk about the studies yet, but wait a month or so...
***
Finally you say: "I would like to see a neutral expert on "study design" comment on the strengths and limitations of the study."
Who would you propose as the "neutral expert"? Why do you seem to think the authors of this study are not "neutral" i.e. "biased"?
Helen
When studies are published in reputable journals, the journal editors have "screened" them and other readers have reviewed the studies prior to publication. This should reassure those who doubt the validity or reliability.
Also, the authors are required to talk about the limitations of their study within the text. Many suggest reproducing the study to further support the findings.
Chris and Vic
TPD here. I am not suggesting that there is an error in the data that was looked at, or that the folks doing the study did anything other than report on the findings.
The "neutral study expert" (this is my made-up term for lack of knowing the correct label) would be someone who is knowledgeable in study design and data interpretation - ie, someone who could assess the significance of the reported results relative to *other* studies and information on the same topic.
Just an example - this isn't really a study per se, it is reporting of data collected from an *exceedingly* small, essentially self-selected sample (and also one that would be expected to include a high number of "issues"...not sure of the term for this either). The conclusion is that more follow-up data collection and patient screening should be done. No cost really associated with the screening (5 mins of a ped's time at a well visit) - no risk of harm really - pretty much just something to go on the publication list of the authors' CVs.
Helen you personally would assign a great deal of significance to this article; I would have to have a lot more information from other sources before knowing what category to place it in.
Also, I wasn't clear about how many MRIs were done - in our case we were encouraged to get one MRI, with optional follow-up MRIs after that. As everyone knows, the consent form (especially at a teaching/research hospital) generally includes a release to use the information for study purposes--it's not like you can just negotiate the document with your doctor and redline it here and there to arrive at a mutually-acceptable scope!
Still, what about the data showing that 100% of the 26% (ie, 26 kids) of the premature toddlers identified in the study as exhibiting a plurality of behaviors on the autism spectrum had an MRI? Isn't this alarming? Should further study be done on the link between MRIs being done on premature babies and autism? (being facetious here, but you get the point...)
I do not believe prematurity causes Autism. Do I believe that preemies are at higher risk for Autism and Autism Spectrum Disorders? Absolutely! Preemies are at higher risk for a laundry list of other illnesses and disorders, why would Autism be any different? Genetics play a huge role in making some people more susceptible to having Autism and Autism Spectrum Disorders. IMHO, I believe that some type of contamination is at the root of Autism and Autism Spectrum Disorders.
There is a controversy about the safety of bisphenol A (BPA) found in polycarbonate plastics. This compound mimics estrogen. Water bottles, baby bottles, and food containers (peanut butter) often contain BPA. The use of plastics has grown immensely over the last 30 years. So, has the incidence of Autism and Autism Spectrum Disorders. Isn’t the rate like 1 in 150 births worldwide? Could plastics be another possible reason for the rise in Autism?
-Tammy-
Most people see these types of "studies" as being used to enable premature kids get the help if they need it via more funding from government agencies (eg, EI; schools; SSA).
What I see, however, are the "results" being touted by Helen and her ilk (and lots of businesses like insurance companies would generally join the chorus because it is in their financial interest) to support the "genocide agenda".
It IS all related to the ethical question.
Tammy, You may be correct but as far as I know no scientific evidence has emerged (except some genetic evicence) linking the consumption of/exposure to any particular substance to autism. The link between thimerosol/vaccines and autism has been essentially disproven (yes I know about the case settled recently but that was a case of: (1) a girl with a mitochondrial disorder being exacerbated by an immune system response (maybe the vaccine was the culprit, maybe not), and not a case of a vaccine causing autism; and (2) a legal definition of causation (a settlement to boot), not one based on scientific causation).
Umbilical cord clamping is a new one to me.
The person who discovers the (or even a) cause of autism - or who even establishes a strong correlation between autism and some other condition or substance) will be world-renowned. Who knows, maybe that person is in our midst.
TPD here.
"Another interesting autism correlation research: autism rose at rates that closely tracked cable subscriptions"
Wow! Further study is definitely needed :)
What about Helen do so many find threatening? I am tired of people constantly trying to turn her words into something other than what she said. She presented a study and talked about its findings. Period. And yet someone is able to make some weird connection that Helen supports genocide. Amazing! This has thus far been relatively free of attacks but I guess some people just NEED drama.
A few years back, I did a research paper on NLD and Aspergers - many theories, of course exist as to the cause. .one I haven't seen discussed here yet FOLIC ACID. Yes, there is a theory out there that correlates the dramatic increase of folic acid being added to so many of our foods with the beginning of the rise in autisms.
Folic acid is added to practically all of our cereals, breads, etc in an effort to reduce "neural tube defects". .hmm. .wouldn't it be something if excess folic acid that helped prevent one brain abnormality contributed to the dramatic rise in ANOTHER brain abnormality? The March of Dimes would have major egg on their face for pushing this one!
However, I do believe that preemies are at addl risk of autism - my God - what these kids must endure in the NICU when their brains are developing at such a rapid rate.
As a parent of a year old 28 weeker, I watch the news with trepidation these days as it seems there nothing but a relentless stream of depressing studies on the neurological, physical and emotional futures of preemies. I know that I will probably for the rest of my life be without a sense of fear and guilt about my son's life. Maybe he'll dodge all these issues, but then again maybe not. And that is the daily reality.
that should be "for the rest of my life never be without a sense of fear and guilt about my son's life. "
To Terri w/2,
Very interesting possibility. I never heard that one before. Same with Helen's umbilical cord clamping.
Still have to agree with Krysten,
that the possibilities of what is causing the rise is too numerous to handle.
Let's just hope an answer is out there along with a cure and we find it soon.
-Tammy-
Unlike most of the stuff I read about autism causation, there is actually some interesting stuff out there about cord clamping that makes physiologic sense. If you consider that info, along with the info that immediate cord clamping is the norm in preemies so they can be handed off to the neonatology team, it actually makes some sense.
I haven't tracked down hard data on this particular issue yet, but the basics of the argument are discussed here.
Just read back a few posts (or topics/comments, not sure which) and Helen herself said that she considers 26 weeks to be a cutoff point for life-saving measures (Helen, not sure if that's what you actually said, so if necessary re-state or refer back to the previous post).
ALso google for a defintion of "genocide". You will see that it's not a "weird connection" - in fact "genocide agenda" is a very apt label.
The only "weird connections" I see are the ones made repeatedly by the application of so-called evidence that is offered as undeniable proof that a preemie born under a certain gestational age and/or birthweight will certainly have such a poor prognosis that his life, which will be so fraught with suffering, would be unworth living. The proof is undeniable because if you do dare to deny or question it, you will be labeled as either being in denial, or having a child that is too young to reveal the extent of their damaged self.
Kristie McNealy, the information you linked to was published by you on your website, no?
I googled cord clamping and came up with only page after page of chat and articles published by alternative medicine practioners and websites.
I need more time to read and digest, but just a quick response:
Most, if not all, of the pediatricians we've spoken to immediately dismiss any possible link between vaccinations and autism as "anecdotal." I'm still on the fence on that one --I'll read more, Helen, I promise!-- but I agree with Kathy on considering a "predisposure." I try to be at least semi- well-informed, so that I can make a wise choice based on what I know about my son as an individual, and what I know based on the science. (I was unwilling to take any risks, for example, when the combo- shot Pediarix was "pushed" on us to "catch" my son up on his vaccinations...)
That said, I agree with Helen, and Chris and others about validity in scholarly articles, but I guess what I'm trying to say (and doing a poor job of it) is that I believe it's difficult for most parents to "translate" and digest numerous sources, let alone discern between them. I do believe studies out there in the general population --meaning, trade magazines vs. scholarly journals-- are biased.
It gets overwhelming, and it's easier to catch the latest soundbite on AOL news.
To be honest, I feel very ignorant just reading many of these posts; they're written at a level I'm not used to at this point in my life. I'm just determined to keep up and learn more on behalf of my son.
That's all. :)
Has there been research looking at the correlations between autism and C-sections? In a C-section the need/desire by Dr's to clamp the cord would be even greater than a typical vaginal birth. It would be a little tricky to find good candidates for the study since the need for C-sections are many times tied to some underlying issue of either mother or child or both. But I'd be interested in seeing the link between c-sections and autism if there is a possible link with the clamping of the cord.
And as for autism rates being higher in preemies. It certainly makes sense to me. Even without the research it seems logical. Our kiddos undergo very "unnatural" things because of prematurity...inadequate time in the womb..the only natural place for fetal development, exposure to light and sound, IVHs, pain, drugs, and unnatural nutritional sources.
If we can accept that autism may be due to too much tv, vaccines, plastic, and other enviornmental causes, it seems perfectly reasonable to me that children who should still be developing in utero, who are exposed to light and sound too soon, and who are given medication, drugs, and TPN to stay alive would be at risk for autism and other neurological disorders.
We don't have to agree that resuscitation and treatment should not take place for these kiddos just because they are at higher risk for autism. And therefore, I don't think there is any reason to have issue with this study or any other that highlights the that difficulties our preemie kiddos can face.
Science helping to explain what are kids may be at risk for is a better reality than some of the preemie moms with older children who were accused of making up their children's symptoms, or worse.
Annoymous 11:16,
I wrote my comment before yours was published...(I got to typing it and the phone rang and I had to grab it before it woke the kids from their nap)
I was not writing in repsonse to your comment, but I guess what I wrote does fit.
I can appreciate what your saying because it does seem like a lot of time the negative is highlighted when it comes to outcomes of preemies. Is there an agenda behind it? Yes, probably. Does it give weight to the gestational age limit to resuscitation? Only if you make decisions about your child's life based on statistics and the fear of disability. You can acknowledge that your child will not be "perfect" health wise and probably developmentally and you can accept that, or you can (at least at my hospital) choose that the risk is just too great and opt not to treat your 23 or 24 weeker. I used to be unable to stomach how someone could choose not to treat because they feared their child would have disabilities. Only after I stopped picturing MY children while reading/thinking/pondering was I able to understand. They certainly weren't picturing my beautiful, amazing, lovable children. Perhaps they envisioned a friend's child who is severely disabled and, in their eyes, suffering. Perhaps they work with a population of disabled people who are "unwanted." Maybe the fear that their child would be sentenced to a lifetime of pain made their decision. There are a million scenerios.
As long as no one is condemning my choice, or trying to fight to take the right to choose away, I've gained a tolerance and understanding for the "other side."
As far as this particular situation highlighting a study that links prematurity and autism, I don't see it as a negative and perhaps it can help in diagnosing and aiding these kiddos and their families.
Helen Harrison
To Anonymous 11:16 who states:
"Just read back a few posts (or topics/comments, not sure which) and Helen herself said that she considers 26 weeks to be a cutoff point for life-saving measures (Helen, not sure if that's what you actually said, so if necessary re-state or refer back to the previous post)."
****
I said no such thing.
I laid out the well-documented and widely accepted facts that below 26weeks gestation, most infants either die despite treatment or survive with severe handicap after a grueling and inherently damaging medical course.
As a result, *parents,* I believe, should have the right to decline treatment at this gestational age if they wish to do so.
This is also the position of AAP and ACOG.
Your raving about "genocide" in this situation is both irresponsible and absurd.
Helen
the thread was going along so smoothly and then the off topic subject of autism in preemies comes up..
Can anyone deciding about whether to vaccinate or not, please, please remember that this all kcicked off with Andrew Wakefield drawing his "conclusions” from a study of 13 children.
The word flawed does not come near it. Truly.
Please grab a tea, and a large slice of something tasty and read here
http://nhsblogdoc.blogspot.com/2007/07/andrew-wakefield-mmr-autism-and-gmc.html
Do you ever have anything good to say about a premature child that is born at 26 wks or earlier? Just curious because I have caught on by being a reader of this blog that you on a consistent basis present data or studies that are 99% of the time negative. How do you think this may make a parent of a younger gestational age preemie feel? Do you think that maybe they perceive you as someone who enjoys being the bearer of **bad news**? I am fairly positive that in the end you really do not care what they think but just as a outsider looking in this is how it appears. Example: you interrupted the thread to post about the new data or study on autism in preemies which to some parents is **bad news** or something that at this point in time they are not wanting to deal with, most were going along with the post peacefully and now it has taken a turn totally off topic. I don't feel that those that disagree with Helen are Helen bashers, it appears that if you do not agree with all that is presented then the claws come out. Obviously the opinions of some are not going to be changed!
TPD Here.
"As long as no one is condemning my choice, or trying to fight to take the right to choose away, I've gained a tolerance and understanding for the "other side.""
This is my personal feeling as well. I fear, however, that the (perhaps unintended or perhaps intended) effect is the justification for removing the choice from parents under a certain gestational age or under certain circumstances, or deconstructing premature babies to the sum of their medical issues to the point where instead of miracles they are seen as defective liabilities. When people are deconstructed clinically the way preemies are so often, it is easier to make decisions about their futures as if they are not sentient beings.
I think it's important not to get dragged down in the negative. I think it's important to put a microscope to conclusions and thoughts and assumptions. This is a deeply personal issue for me, no doubt.
"Your raving about "genocide" in this situation is both irresponsible and absurd."
Really? It would be my conclusion that what is both irresponsible and absurd is the unremitting, yet only anecdotally supported, expression of the *personal opinion* that "...below 26weeks gestation, most infants either die despite treatment or survive with severe handicap after a grueling and inherently damaging medical course."
These statements--both the conclusions and the data that lead to them--are refuted in various places by reputable scientists (eg ex-utero, in his "Tales From the Womb" blog among others).
I am not "Helen bashing" when I express a fear that these types of irresponsible statements will be used to justify worse things than life-saving measures being inflicted on our preemies.
Anonymous, You said
"How do you think this may make a parent of a younger gestational age preemie feel? Do you think that maybe they perceive you as someone who enjoys being the bearer of **bad news**?"
I think this is also a sad consequence of Helen's posts. Who knows what affect it has on a new parent's psyche, perhaps one making life-and-death decisions right now? Unfortunately this protest gets you labeled as an emotionally over-wraught parent yet to face the inescapable, scientifically proven truth that "...below 26weeks gestation, most infants either die despite treatment or survive with severe handicap after a grueling and inherently damaging medical course."
Don't bother disagreeing, you don't have enough years left to dissect the studies you will be cited. Nevermind that others have devoted the years necessary to look through the entire body of research and come to different conclusions. They have a profit motive to conclude that younger preemies are worth saving.
A different issue entirely: what if our understanding of the brain and the way it operates improves dramatically in the near future, to the point where certain damage and diseases can be repaired?
From Helen Harrison
To Anonymous who said:
"you interrupted the thread to post about the new data or study on autism in preemies which to some parents is **bad news** or something that at this point in time they are not wanting to deal with, most were going along with the post peacefully and now it has taken a turn totally off topic."
***
It was a major news story that has strong bearing on the blog title: "The Preemie Experiment."
For many people on this blog it is a validation of what they already know to be true about their child. For the rest, it should give some guidance as to what to look for in your own children (and how best to treat it -- autism can be helped with intensive therapy).
People who don't want to read about the evidence on preemies probably should avoid a blog entitled "The Preemie Experiment." Those who want non- evidence based happy talk about preemies must know that there are many other blogs out there that will fulfill your needs.
That being said, I'm also more than ready to get back to the topic of the thread, and would like to strongly recommend Shannon Brownlee's excellent book "Overtreatment: Why Too Much Medicine Is Making Us Sicker and Poorer." Thanks to Buddhist Mama for bringing it up!!!
This book *really* gives a context for the current discussion of the costs and tradeoffs in high-tech medicine such as neonatology.
Helen
To Anonymous who said:
"Really? It would be my conclusion that what is both irresponsible and absurd is the unremitting, yet only anecdotally supported, expression of the *personal opinion* that "...below 26weeks gestation, most infants either die despite treatment or survive with severe handicap after a grueling and inherently damaging medical course."
This is not a personal opinion: see the follow-up studies done by EPICure, The Vermont Oxford Network, the NICHD, and more.
This is the best most recent evidence, and this is what it shows.
Again, the major medical organizations acknowledge and endorse this evidence.
Helen
It was my understanding that the topic of this post was about the cost that it takes to save a preemie in comparison to what that money could be used for in other needy situations, and it was flowing smoothly along on that topic. I am a parent that comes here because I feel that the blog does have a lot to offer, I will not try and deny that there are very useful as well as interesting things posted on here. Your studys that you present are never anything other than negative, it will be someone like you who one day will be the reason that a mother of a 26 weeker or below may not have the choice in taking her child home. Sad. Do you want to really get the word out to help parents or is your motive behind all that you present to further prove that you are justified in your feelings about saving preemies of a younger gestational age, sort of a **in your face** type thing if you will.
To Anonymous 11:22
Yes. I linked to my site because I wrote an article on the issue last night, which I think is apparent from the fact that my name links to the NICU 101 URL on most of my comments here.
In both my comment, and on my blog, I directly say that I haven't found any documented hard evidence indicating that cord clamping causes autism. Thus the statement:
"I haven't tracked down hard data on this particular issue yet"
However, there have been studies which show risk for other problems from immediate cord clamping, including increased risk of IVHs. If you follow this link, you can read one study on this issue, and see their complete references for other related studies.
I went on in my post to outline what the physiological argument is behind the theory. It's just that, a theory, based on what we know to be true about the transition from intrauterine to extrauterine life, and what researchers have found about the practice of ICC in general.
I only wrote about it because I found the theory interesting in light of two other studies I learned about in the past week or so - one related to preemies and cord clamping, and another related to preemies and autism. When the possible link between autism and cord clamping was mentioned here by Helen, I wondered to myself whether all three were related. ie 1) ICC may cause problems in preemies (a follow up study is being done), 2) preemies seem to have a high rate of autistic traits, 3) some people theorize that ICC and autism are related. Thus, perhaps it is the high rate of ICC in preemies that leads to the high rate of autistic features in preemies.
I find the idea intriguing.
From Helen Harrison
To Anonymous whos said:
"It was my understanding that the topic of this post was about the cost that it takes to save a preemie in comparison to what that money could be used for in other needy situations, and it was flowing smoothly along on that topic."
***
Do you really think that autism comes without a cost? If autism and similar brain-damage-related mental illnesses appear in a much higher rate among preemies (and they do), this is important news that belongs in the "costs" thread.
Autism and associated illnesses need to be studied in preemies and the lifelong costs of these illnesses need to be factored into the equation.
Helen
Sorry for possibly bringing up off-topic things. I think this relates directly to the point, perhaps from a different perspective.
http://books.google.co.za/books
?hl=en&id=oXqs8QCwCpUC&dq=david+
benatar+better&printsec=frontcover
&source=web&ots=lLD_p2jjx4&sig=nVt
T94YyPL9K3_t0TXcdF9H1UnI
You're all going to seriously need to copy and paste that incredibly messy web address - it links to a google books preview. It will not be clickable!
This book is written by a professor of ethics at the University of Cape Town. Basically (and its almost impossible to summarise) his point is that:
a.) People are generally a lot less happy than they think they are
b.) It is impossible to tell whether or not your as yet unborn/unconceived child will lead a happy or miserable life
c.) It is impossible to ensure that your child will have a happy life
d.) Therefore you are likely to be doing harm to the child you bring into the world
e.) It is therefore morally irresponsible to have children
Granted, his viewpoint is extreme. However, I think the issue of harm is a very relevant one. In the case of extremely premature babies it is not merely possible that they will have an unhappy/difficult life, but almost certain. In this case, is it not morally wrong to bring a child into the world when it is almost certain that they will live a life of suffering? There is a specific chapter in the book which deals with disability, but its not available in the google books preview.
I see a lot of comments about "accepting that your child won't be perfect", or "being okay with your child's disability". Please do not see this as an attack on those who have made those kinds of statements, but I feel that that is a very selfish point of view. What if your child won't be okay with their disability? What gives a parent the right to make that kind of decision, against what is increasingly the accepted medical standard? Everyone keeps talking about how they don't want anyone making decisions for them, but that is exactly what is happening to those children.
Again, this is not a personal attack, so please try to see this as an alternative philosophical viewpoint.
If it comes down strictly to cost, then without a doubt let’s stop saving preemies period. Obviously, it would be better for the community as a whole, since this would take the financial burden off of schools trying to educate these brain damaged children. While we’re at it, if we get rid of the rest of the sick and disabled people out there, along with the elderly and don’t forget the poor that are making loads of money off of the welfare system, then just maybe we can save enough of our community’s money to spend it on something more important, like war. Yeah, that’s sounds like an idea.
Helen Harrison
To Anonymous 5:47 who said "If it comes down strictly to cost, then without a doubt let’s stop saving preemies period. "
***
I don't think anyone has said that this comes down "strictly to cost" at least of the financial variety.
For me, it comes down to human costs (pain and suffering of the child and family)and -- given the scenario presented by Chris and Vic -- to difficult trade-offs.
And just where are all these "poor" people that you claim are making "loads of money" off the welfare system?
It takes major, clever scamming of the system (of the sort some high-flying medical professionals pull off)to profit in any real way from the public trough. (See for example, today's _Wall Street Journal_ article on so-called non-profit hospitals and what their CEOs are paid. And then read Shannon Brownlee's book -- especially chapter 4.
Helen
To Dee--
Thank you for your "alternative viewpoint!"
DH and I have struggled with personal attacks because we made the deeply personal (truly heart wrenching) decision to discontinue life-support for one of my 28-week sons.
Some have said it must've been because we couldn't handle having a handicapped son; others have said, "well, you couldn't afford it anyway"-- both of which, besides being extremely hurtful, made no sense considering we still have his brother to worry about!
Maybe, on a much deeper level, I have to acknowledge some of these concerns: how would we have cared for my "vegetative state" son, and his brother? But, would the ends have justified the means?
For the most part, I am at peace, but now and then...
After getting many opinions from the medical community, we made the decision to "let him go" based on the fact that it seemed we'd be keeping him alive for our own sakes. The "cost of suffering" weighed heavily on us.
So, thank you, 26weeksmommy, for seeing "the other side," too.
Helen Harrison
To Kysten who said:
"DH and I have struggled with personal attacks because we made the deeply personal (truly heart wrenching) decision to discontinue life-support for one of my 28-week sons."
Having been there, made the same heart wrenching decision, and been attacked for it, my heart goes out to you and your husband.
Helen
TPD Here. I apologize if in my own comments it sounds like I don't support the right of parents to make decisions to withdraw life support for their children who are in very hopeless situations. I don't know if that's what it sounds like, but just in case I want to say that I wholeheartedly support that right. I almost can't imagine any more difficult decision.
I just believe there is a vast distance between supporting that right and buying into the "wrongful life" sentiment that is implied and expressed in just about every one of Helen's posts. It is something that one is assaulted with at almost every turn when looking for support or information about premature birth on the Internet.
"It is something that one is assaulted with at almost every turn when looking for support or information about premature birth on the Internet."
Personally, that does not represent my experience while doing countless hours of my own research on the internet. I do not have the same gift as Helen and some of the others who can get so indepth about reports and periodicals. I need Helen to give me a summary of all that she has read because I just do not have that same attention to detail.
All of the data and points of view that I read are used to help form my opinions and I cannot blame anyone for my conclusions. Thankfully, after all of the personal attacks, Helen still posts information for me and others to review. In order for me truely contribute to conversations such as this one, I need all of the facts: the good, the bad and the ugly. As a naturally anxious person, I like to avoid confrontation and bad news; but some issues are just unavoidable.
My preemies had very difficult beginnings, but now they are one of the "feel good stories". So, that is what I bring to the table. But it doesn't make the pain and suffering of other preemies any less real. All of our stories are necessary to solve the puzzle.
Thank you to those of you who have the burden of relaying information that no one wants to hear.
Helen Harrison to TPD who said:
"I just believe there is a vast distance between supporting that right and buying into the "wrongful life" sentiment that is implied and expressed in just about every one of Helen's posts. It is something that one is assaulted with at almost every turn when looking for support or information about premature birth on the Internet."
***
The term "wrongful life" is not one that I have ever used.
And if you feel "assaulted" by bad news about preemies, I suggest tht you get off the Internet (except for the blogs and lists that are reliably cotton candy), avoid news reports and newspaper articles, and cancel your cable (this will, "research" shows, protect your child from autism!).
Buy blinders and ear plugs while you're at it, and don't take your child back for follow-up.
Honest information seems to be at odds with your idea of "support."
Helen
Just to clarify,
I do not see withdrawing support as "the other side." I too made my son a DNR and came thisclose to removing life support.
I was referring to the "other side" as those parents who opted not to initiate care for their extremely premature children simply based on gestational age.
And like I said, I am coming to an understanding as to why some people choose not to resuscitate.
But please do not confuse taking a child off life support as not treating at all. I have always said I fully respect and agree with ending care when appropriate. I made that decision myself, and had he not improved over the weekend we gave him to spend with family, I would have been fully at peace with that choice based on my son's medical condition at the time. I thank whoever made his miraculous recovery possible every day, but again, was fully prepared to let him go based on his dire state at the time.
Dee asks:
"What gives a parent the right to make that kind of decision, against what is increasingly the accepted medical standard?"
I'm not taking it personal because I am very content with our decision to intiate life support to save or children's lives. So please understand I am not upset whenI write this.
What gave me the right to choose life for my children was our hospital. Our hospital's policy is we can choose to either allow our children to die or try medical intervention in an attempt to keep them alive. If this medical intervention was not possible, or against the "medical standard" we would have been unable to make this choice and our children would have surely died. Thankfully, the "medical standard" is such that in some hospitals it is deemed ethical to allow parents to choose resuscitation for 23 weekers.
Do we have a right to bring children into this world who may very well be disabled? Yes we do. We do not mandate mothers get amnios to test for genetic disorders and demand an abortion if the child is found to be disabled. As a human race it is my optimistic belief that most see the value of human life period. I'd like to think we recognize that biology is imperfect and that we should not banish those who are disabled from society.
There are disabled people in this world who are happy with life. There are those who are not. The same goes for able-bodied people.
No one could tell me for sure what the "outcome" would be for either of my children. I wasn't willing to not give them a chance based on possibilities, or even probabilities. Because even if you ran down the list of possible diagnoses, this tells me nothing about the spirit of my children. I believe disabled people are more than a list of medical and/or developmental "issues."
I understand that there are people suffering because of their disablities. This is extremely heartbreaking for them and their families. However, when speaking about prematurity there is a wide spectrum of "outcomes." I can't speak for what life is like for those who share here who talk about how difficult their lives are with their disabled children. And they can't speak about my life or how my children will view their own lives.
Furthermore, disability is a reality, whether we eliminate prematurity or not.
To me, the answer can not be to eliminate those who are or could potentially become disabled.
Well said 23wktwinsmommy!!!!
Questions I have:
Will a parent's love make up for all the difficulties an ex-preemie may face in his/her lifetime? If we value our children unreservedly and pour out our love and support to them, will it take away the hurts of living out a life of disability? What will our children say about this when they are older
--will they say that everything is okay because my parents love me?
How long and how much can we thwart the natural order? Such as, the survival of the fittest? Mendel's laws? Natural selection?
What are the consequences of the survival of the most fragile?
Are there fates worse than death?
The instinct to save our lives and the lives of our children--does this instinct work in the long run as well as in the short run? Can we imagine that this instinct would ever betray us? That clinging to life would NOT be in our best interests?
Do our children have "quality of life"? Now? Guaranteed into the future, when they will not be able to live independently? When their healthcare and their education will not be affordable any longer, or when it will simply stop? Will we say that they have a high quality of life when we are no longer supporting them in our own homes?
Are the futures of our ex-preemies bleak in any way? Can we imagine that they will become bleak if they are not now bleak?
If their lives became bleak or their quality of life is diminished, would they thank us for bringing them into the world?
Is letting go a betrayal, or can it be an act of love?
The Oglala Sioux, whose elders "threw themselves away" when they could no longer travel from summer to winter hunting grounds and then back--did they realize something that we fail to realize? Was there a wisdom in throwing oneself away? (On the day of departure to the summer/winter hunting grounds, the elders made their own judgment call--they walked into the woods, rather than being carried on a sledge by relatives. They decided NOT to be a burden on their families.)
And the Jews who killed their children during a seige, rather than let them fall into the hands of the infidel, who would have cruelly tortured and murdered them
--were they wrong to kill their own children?
It seems that there are many dilemmas and paradoxes. Things may not be what they seem. Our values need to be proven by the exceptions at times.
Fight for your life--AND yield it up. Hold on AND let go. Life is the most important thing we have--AND we must be ready to give it up. IMO, we must learn to hold both sides in tension--to come down on one side sometimes and on the other side at times.
I think if we gave ourselves, as individuals, the opportunity to sit and meditate on these things, we would see our way clear. AND/or we would learn to accept. Or to suspend judgment/belief.
Chris and Vic
TPD here. Thank you for your post, 23wktwinsmommy, for me that is exactly the point.
Helen, The term wrongful life is a legal term - the theory under which children/parents sue the medical community for allowing the children to live. I think that is what you complain about all the time - that the medical community did not honor your wishes and your son is wrongfully alive. So even though it is not a term you have used, *I* am using it to describe the tenor of the "honest information" (your term) you dispense.
Also, thank you for your most helpful and professional suggestion that I "get off the Internet ... avoid news reports and newspaper articles, and cancel your cable (this will, "research" shows, protect your child from autism!).... [and] [b]uy blinders and ear plugs while you're at it, and don't take your child back for follow-up."
TPD here. No answers, but as people don't we all work our entire lives to basically accept and love ourselves--to understand that we are no better than, and no less than, anyone else--to discover who and what we are? Isn't that the essence of being human?
So "will it take away the hurts of living out a life of disability? What will our children say about this when they are older
--will they say that everything is okay because my parents love me?"
I don't know. BUT the alternative is much worse I think. Take a severely disabled former preemie who works his whole life to accept and love himself like he is, just like everyone else...but his own mother makes no secret of the fact that she feels his life shouldn't have been. She tells everyone in the world via the Internet that she was told she could sue the doctors who let him live.
How is that an expression of parental love? What would hurt more--the physical pain or the knowledge that your own mother felt you were better off dead as an infant.
Very deep Chris and Vic.
I can see the situations where the most ethical thing to do would be to 'let life go.' This is why I believe in the right to end life support, both in preemies and in, say, a child who was the victim of drowning or whomever else.
Does a parent's love extinguish disabilities...of course not. Not in ex preemies or in any disabled person.
As for the "laws of nature" natural selection and the like...well, our biology is far from perfect. Preemies do not encompass all of the disabled. Biologically "things go wrong" and children are born breathing and without the need of life support, and yet can be severely disabled.
What then do we do with these children? We can argue we should allow preemies who are at risk for disability to die, but what do we do about the child who is severely disabled and who is not on any type of life support? Deny them food, leave them in the woods so they are never a burden on their families? Of course I am not serious.
I feel like this has been said time and time again, but, the issue with prematurity is there is no clear definitive answers. Life is not perfect or "issue-free" for those above 26 weeks gestation, and these babies many times spend little if any time vented. There is no life support to remove, and yet they too are faced with complications. Are there more complications associated with babies born under 26 weeks? Yes. Does this give us any specific information about any individual child...unfortunately it does not.
So what do we do with this information? Do we let these lives go because of possibilities? Even if 100% of all children born under 26 weeks were considered disabled, do we, can we, know to what extent? Of course we can't. Vic's life and dxs are different than Paige's, whose are different than Caitlyn's (all older ex under 26 weekers whose parents share specifics about on this blog.)
So what motivated our decision to try and hold onto life? The belief and hope that our children would have valuable lives. The acceptance that life may not be "normal" but that to us, it was still valuable. Our decision was based on the fact that there are children who are not living in a constant state of suffering.
It's starting to really bother me that prematurity is constantly colored as a severley disabled life. This is simply not the case. Are their brains affected...yes. Does this translate that all children mirror the lives of your specific child/ren...no.
Some are in special ed, some are not. Some can walk, some can not. Some have seizures, some do not. Some have shunts, some do not. Some have sensory issues, some do not. I could go on and on. The fact is no research can tell us the fate of an individual child.
Helen Harrison to TPD who said:
"Helen, The term wrongful life is a legal term - the theory under which children/parents sue the medical community for allowing the children to live. I think that is what you complain about all the time - that the medical community did not honor your wishes and your son is wrongfully alive. So even though it is not a term you have used, *I* am using it to describe the tenor of the "honest information" (your term) you dispense."
***
I know that "wrongful life" is a legal term, but it is one that I find offensive, and I do not use it.
I do not believe anyone's life is either "wrongful" or "rightful." I just don't think about life in those terms.
You talk about the medical community "allowing" a child to live, but what happened in the Miller case and others like it is that doctors imposed unwanted, aggressive, and arguably inhumane care on a marginally viable child against the parents' ethically, morally, and legally valid objections to that treatment. This is assault and battery.
And I do not "complain all the time [or ever] that the medical community did not honor my wishes" because that is not at all what happened in our case. I leave it to you to go back and find the post where I gave the account of what actually happened.
My son is not "wrongfully alive" although he was certainly wrongfully treated at times by neonatologists, surgeons, and others.
And, I do not "dispense" the information you find so objectionable -- the medical community does. I simply pass it along -- when there is good news about <26 week preemies, I'll also let you know.
Other parents want to hear the information I pass along because many of them they know that mysterious conditions are afflicting their preemie children.
It is helpful for them to know that, yes, 26% of preemies actually screen positive for autism symptoms, because they have had such concerns about their own children dismissed and their parenting questioned.
We have heard from neonatologists on this list that autism has no connection whatsoever to prematurity. We now know that these neonatologists are wrong.
This is important information for parents who are struggling with their children's autism or autistic traits.
So is information confirming that preemies commonly have kidney, liver, immune, bone, lung, cardiovascular and metabolic problems. That preemies are more likely to get cancer at early ages, etc., less likely to live independently as adults. If this is happening to your child, you want to know why (as best such questions can be answered) and you want to know that you are not alone.
You also want to know that you are not to blame (as is often the ignorant implication of doctors, educators, and "helpful" relatives). If these things are happening to your child you want and need validation.
If these things are *not* happening to your child, then rejoice!
I suggest that if you are not confronting these issues, and you are uncomfortable with those of us who are, that you do yourself and us a favor and do not listen to the conversations you find so unsupportive.
And, please, stop with your misleading commentary about what you think I have said.
Helen
I've been following this discussion but haven't really been able to articulate what I wanted to say until now.
I'm just going to skip all the replies and respond to the original question as much as I can.
I'm a 25 year old, former 29 week preemie. Yes, I realize that sets me outside the boundary to be considered a micropreemie, and frankly I am grateful for that. I would be considered a success story as I have only "minor" issues, although they affect my daily life (sleep disorders, NVLD, ADD-inattentive, depression, and other issues that make it difficult for me to hold a full time job and live a fulfilling life).
I felt sure that I would be on the side of not resuscitating babies below 26 weeks. I love my life but the societal pressure on someone with even my minor issues can be unbearable at times.
Then I read an update on the blog of a friend who was pregnant with badly wanted twins. At 23w1d, she went into premature labour and delivered her babies. They elected to give comfort care and both babies died within a day. My heart broke, but my eyes first went to gestational age and I wondered, couldn't they have been saved.
I guess that's what my emotional reaction is, and I'm sure it would be even stronger if they had been my own. But the thought of my child living with horrible disabilities as a result of my decision for heroics is at least equally heartbreaking, if not more so.
I strongly support FULLY informing parents of all the consequences to help them make a decision that is not made solely with the heart. We all know that the road to Hell is paved with good intentions. Perhaps there should be some sort of counselling early in the pregnancy where couples are given information on prematurity and asked to make a decision before they are in the emotional maelstrom of actually having a micropreemie.
I also agree with the idea that people should be spending their money on more important things than anti aging, but now you have a very slippery slope because you'd be telling people what they could and could not spend their own personal income on. I wouldn't want to live in a society like that.
So my long winded comment is basically to say that I support early information for parents so they can be the ultimate decision makers. I would also support the idea of an ethics board to help them make the decision. Perhaps if there WERE specific funds earmarked for their child, it would give the parents some closure to see that their child would be helping X number of other people in Y situation. I know that would comfort me- that I know my child would have done the world some good in his or her short life.
Thanks for listening.
From Helen Harrison
toSusie Korbel who said:
"I strongly support FULLY informing parents of all the consequences to help them make a decision that is not made solely with the heart. We all know that the road to Hell is paved with good intentions. Perhaps there should be some sort of counselling early in the pregnancy where couples are given information on prematurity and asked to make a decision before they are in the emotional maelstrom of actually having a micropreemie."
***
I completely agree with you about the early counseling.
Our son was also a 29 weeker (more or less) and he was on the more impaired side of survivors at that age. I hope you will stay with us and tell us more about your life.
Helen
I know this has been said before but I think that how your preemie is *now* has a lot of bearing on how one feels when it comes to things like whether to continue care or not, not knocking anyone on their choices but from where I sit I can honestly say that *I* would not have chosen any differently than I did, Kellars outlook was not the prettiest by far but *I* was willing to take on whatever challenges he may have had, again this is not pointing the finger at anyone or to make anyone feel that they are not strong enough or willing to raise a child w/possibilities of a disability, this is how *I* feel..I too dislike the fact that to some prematurity is painted as all "negative" not all situations end up like that...
From Helen Harrison
To Kellar's Mommy who said:
"but *I* was willing to take on whatever challenges he may have had, again this is not pointing the finger at anyone or to make anyone feel that they are not strong enough or willing to raise a child w/possibilities of a disability, this is how *I* feel..I too dislike the fact that to some prematurity is painted as all "negative" not all situations end up like that..."
***
It is always interesting to me that parents of (very young) preemies claim to be willing to accept whatever "challenges" their child may have, while, at the same time, objecting strenuously to hearing about the medical research on preemie outcomes (too "negative") or about the challenges with which older preemies are coping.
Helen,
who has cared for our disabled preemie son Edward, at home, for over 32 years
Helen you can take what I said however you want, I personally am tired of every time I say something that is not negative about MY child you have something to say, why is that? Can you not get over the fact that you and I see things so differently, I don't care how much research you have I don't see things the way you do, not everyone is going to agree with you on things Helen, that's life get over it..And yes I do object to a lot of the outcomes you post about, why BECAUSE NOT ALL OUTCOMES ARE THE SAME...sure you do it b/c some find it valuable, good for them if they gain something from what you post then you have accomplished what you posted it for, why does it bother you that some parents take what you say w/a grain of salt or that some of us choose not to live our life based on these studies..just b/c i am not waiting for your next post on a new study Helen does not mean that i am ignorant of what kellars future may hold, does that change the way i feel about my son, no so i'm not sure what the point of your post was, maybe it was yet another jab at me i feel you like to do that every time i post something you seem to have a bit of sarcasm in your responses i mean seriously was your "cared for Ed 32 years in my home" really necessary helen..i did not post that to flame anyone for any decisions that they made, i was strictly referring to ME and my feelings on MY son, i do not feel that someone who chose any differently is any less of a parent than i am, it was their choice and they did what THEY felt was best for them...
Helen Harrison to
Kellars Mommy who said, among many other things, that:
"... yes I do object to a lot of the outcomes you post about, why BECAUSE NOT ALL OUTCOMES ARE THE SAME..."
****
For goodness sake, Kellar's Mommy, don't you understand that if 26% of <1500 gram preemies have autism symptoms by age 2 that *also* means that 74% do not have these symptoms at age 2?
Don't you see that these studies *don't* show that all outcomes are the same, and that I have never suggested that they were?
Again, I do find it fascinating that those who say they are ready to handle the consequences of prematurity seem so terrified of hearing about them.
If you are already aware of these outcomes, I don't understand why you seem so offended by their mention.
Helen
Helen it's not that I am offended by their mention, honestly I think it's the way you use them *against* a parent like myself. You take my *claim* to take on whatever challenges and it's like you try and make it out to be that I say that but yet obviously I'm not ready b/c I balk at the statistics, or at least that's the way it appears to me..Funny that I am not the only one who has mentioned that not all preemie outcomes are the same yet you didn't bother to respond to any of the other posters who said that so therefore helen i am taking it that you obviously will have a issue with everything and anything that i say, maybe i should just start agreeing with everything you say and then we can all get together and chit chat over drinks...
TPD Here.
"Again, I do find it fascinating that those who say they are ready to handle the consequences of prematurity seem so terrified of hearing about them.
If you are already aware of these outcomes, I don't understand why you seem so offended by their mention."
Likewise, Helen, I don't understand why you are offended by the term "wrongful life." I understand that personally it has to feel better to you to go on about "assault and battery" because that way you have perpetrator and victim, and conveniently you are not in the moral hotseat. You are a champion of rights - parents' rights and preemie rights. That's just not the way I see it.
Still, it is refreshing to know that *something* offends you. Maybe there is some humanity there after all....though aren't you the poster who is fond of referring to preemies as "fetal infants" or something to that effect?
Thankfully you're so consistent in your negativity (and also veer off into pseudo-scientific quackery quite often) that I think your legacy will be as a curious footnote in neonatology.
You're right, 23weeksmommy, I was lumping life support together with initiating care-- sorry.
I think the two are related in the sense that, we need to inform parents (unfortunately, on the stuff seen as "depressing," too)and allow them to be vocal in their child's care.
I have trouble with the "greater good" aspect of this discussion, because I hope myself to be a compassionate person-- but again, in the emotion of the moment I am thinking of my child only, not anyone else's.
Because what it comes down to is, in my experience, no one discussed with me just how sick my little one was, and what "the plan" of treatment was: so rather than making some basic plans immediately at his birth, he endured agressive treatment AND we were forced to make horrific decisions with horrific outcomes, anyway.
However! I think what everyone is saying is that it's incredibly hard to make unilateral conclusions about preemie care becuase there are so many possible outcomes.
So, it sounds so trite, but I want to repeat a thank you to *everyone* for your insights.
I would've rather had Helen's "negative" information than the "everything will be fine" line I was fed...
...because the same people who told me all the miracle stories then told me what a horrible person I was for ending life-support for my (already dead) son.
There has got to be a balance!!!!
TPD Here. I think it's telling that when you google "the preemie experiment," one of the hits on the first page is "I'mNotSorry.net" - a militant pro-choice blog.
Maybe there are some hospitals and neonatologists out there painting perfect pictures...but that wasn't my experience. Unfortunately I'll never forget the meeting I had with the neonatologist when I went into labor at 24 weeks, and not because I felt blissfully reassured.
Doctors have a very strong motivation to avoid being sued. One thing that will get them sued is failing to give informed consent. Generally there so much information imparted that it borders on the absurd.
What is almost universal human nature is to get angry and place blame.
Do you see a lot of blogs out there dedicated to ruminating in the long-term effects of down's syndrome, childhood cancer, or other disorders? Blogs that welcome with open arms the toxic presence of posters that essentially have the *singular purpose* of lamenting the state of the poor suffering medically damaged persons' lives? and telling others who don't share that sentiment that they are in denial?
I am not sure why Stacy thinks this is a good thing.
Helen Harrison
To Kellar's momy who said:
"Helen it's not that I am offended by their mention, honestly I think it's the way you use them *against* a parent like myself."
***
How have I used them against you?
I think you are overly personalizing a medical discussion that has everything to do with the outcomes of "the preemie experiment" and the costs of prematurity.
This is not all about *you* or even parents like yourself -- whatever that means.
***
Kellar's Mommy says:
You take my *claim* to take on whatever challenges and it's like you try and make it out to be that I say that but yet obviously I'm not ready b/c I balk at the statistics, or at least that's the way it appears to me..
***
Yes, that is the way I meant it to appear. It seems to me that if you (and a few others) were not highly uncomfortable with the future possibilities for preemies, you would not be so uncomfortable with these discussions.
***
Kellar's Mommy says:
"Funny that I am not the only one who has mentioned that not all preemie outcomes are the same yet you didn't bother to respond to any of the other posters who said that."
***
I believe I have responded to the others as well, please carefully re-read the posts in this thread.
And, no, I don't want you always (or even ever) to "agree" with me, whatever you think that means.
And although I'm glad to give you advice and information off the blog (as I have done, at *your* request, only a week or so ago) I think we can postpone the drinks until you calm down.
Helen
From Helen Harrison
To TPD who says:
"Likewise, Helen, I don't understand why you are offended by the term "wrongful life."
***
I am offended that you would falsely throw it around the way you have and try to claim, again falsely, that it is my view.
***
TPD says:
I understand that personally it has to feel better to you to go on about "assault and battery" because that way you have perpetrator and victim..."
It doesn't "feel better personally," it's the law..
Further, TPD, you (and your friends) are rendered hysterical by the mention of "fetal infants" which is a commonly used medical term." Try typing it into a search at, say, the journal _Pediatrics_.
And TPD, you accuse me of "pseudo-scientific quackery" -- could you please cite some specific examples and then we can have a substantive debate.
Helen
Helen Harrison to TPD who said of "The Preemie Experiment:"
"one of the hits on the first page is "I'mNotSorry.net" - a militant pro-choice blog."
***
Being "pro-choice" is inherently not militant in that it does not direct others to take any particular action. Are we to assume from your statement that you are militantly "anti-choice"?
"Doctors have a very strong motivation to avoid being sued. One thing that will get them sued is failing to give informed consent."
No it isn't. Can you cite a successful neonatal lawsuit in which lack of informed consent was an issue? If lack of informed consent could be successfully used this way, parent of preemies could make millions!
The much stronger motivation for neonatologists, and for their hospital administrators, is to keep beds filled in their NICUs since this is how many of their hospitals are funded.
Helen
Helen, you too are hysterical (read: funny), though I know you do not mean to be.
Wrongful life (also sometimes lumped in with wrongful birth), is a tort--a type of medical malpractice action--brought by a plaintiff in a civil action. Assault and battery is a crime prosecuted by the state.
So parents cannot bring assault and battery charges against physicians. What they can do is sue them in civil court...when they are arguing that the outcome should've been non-resuscitation and intervention resulted in a life of disability, that is making a legal claim of "wrongful life" (non-abortion would be the claim of wrongful birth).
So what are you talking about "it's the law"?
What else would you call it?
To Anonymous 1:26:
According to the American Civil Liberties Union, a doctor who provides treatment over the objections of the patient [or, presumably the patient's lawful surrogates] can be sued for battery, false imprisonment, and more.
This does appear to be the law.
Helen
Now that we are way off topic I just wanted to ask Helen if she has any information about hospital policy regarding resuscitation.
Helen, you said: "The much stronger motivation for neonatologists, and for their hospital administrators, is to keep beds filled in their NICUs since this is how many of their hospitals are funded."
I am not disputing what you are saying, but I'm curious about the current hospital policies. Like mentioned many times before, our hospital clearly outlined at what age we'd be permitted to resuscitate(23.1.. weight-> had to be at least 400 grams and appearance at birth were also factors in those who appeared very close to the 23/24 week mark.) We were clearly told we did not have to choose resuscitation and comfort care was explained and offered while on bedrest and many times in the three days prior to our twin's birth.
Once in the NICU options were clearly outlined again about ending care and DNRs.
There was no sugar coating, there was no trickery to keep the cash flow coming by continuing to treat our twins. And this wasn't just with our family...it was NICU policy for all extremely premature and extremely ill babies.
Likewise, in sharing stories with other parents with young micropreemies, almost all experiences were similar. The option to resuscitate or not and the option to end care were all given.
These families I've met via the internet and come from various parts of the country.
I don't dispute that there are probably hospitals that don't run as ours did, but I'm curious where you've found that these neonatologists are pushing (over the opinions of the famiy) for resuscitation and the continuation of care.
I would think most hospitals have policies that outline at what age they permit resuscitation and get parental consent.
You haven't found this?
TPD Here.
Helen, OK, let's assume for the sake of argument that you would find a lawyer who would for the sake of not offending you through the use of an accepted legal term that you don't like, sue a doctor under the "intentional tort" theory of assault/battery, vs. a much more likely to succeed theory of negligence.
EITHER WAY you seek damages on the same outcome.
You may be offended by the term "wrongful life," and I'm sorry that you are so sensitive, which frankly surprises me given how you explain to everyone that your use of medical terms (when others may be equally well suited for description purposes) should not be offensive.
TPD said:
"TPD Here. I think it's telling that when you google "the preemie experiment," one of the hits on the first page is "I'mNotSorry.net" - a militant pro-choice blog."
I don't see how this is relevant at all. Someone liked something Stacy said and linked to her, Stacy thanked them for their kind words in their comments section, and now the two are forever linked via the internet. It's not like Stacy's got a secret agenda.
I only spent a few minutes on the website, and really didn't find it offensive. It's a place where women can tell their stories of how they had abortions and it didn't ruin their lives. Since so much of the conventional wisdom out there is that having an abortion will haunt women forever, I don't see how offering a different perspective is militant or offensive in any way.
Kathy, I understand what you're saying that the two sites are unrelated in any way except via linking to an off-topic comment, but the author does point to the preemie experiment as justification for abortions. I do happen to be pro-life (though I used to be pro-choice, pro-life came about only after having kids).
I mentioned it only as an example of the way people outside the preemie community can very easily be led to support the opinion that a certain segment of the preemie population is such a drain on families and society as to be written off in general.
One only needs to look to the success of big business in lobbying lawmakers for tort reform to see how easy it is for the "little guys" to be written off.
From Helen Harrison
To TPD who said:
"Helen, OK, let's assume for the sake of argument that you would find a lawyer who would for the sake of not offending you through the use of an accepted legal term that you don't like, sue a doctor under the "intentional tort" theory of assault/battery, vs. a much more likely to succeed theory of negligence.
EITHER WAY you seek damages on the same outcome."
***
No, one would be seeking damages for an assualt, not for an outcome.
I don't know what your problem is here, but I'm wondering whether or not you were given any choice in the resusciatation and treatment of your preemie?
Helen
Helen Harrison to
23 week twins mommy who asked:
"I would think most hospitals have policies that outline at what age they permit resuscitation and get parental consent.
You haven't found this?"
No, most hospitals have no such policies -- at least that they share beforehand with parents or make public.
What generally happens (according to the neonatal researchers who've looked into the matter) is that preemies are resusitated routinely down to 22-23 weeks (and in some cases, below that) despite the parents' stated wishes or the obstetricians' input.
Helen
I guess hospitals differ on parental consent and at what age resuscitation takes place. What an important question to ask for newly pregnant women.
**The acceptance that life may not be "normal" but that to us, it was still valuable. Our decision was based on the fact that there are children who are not living in a constant state of suffering.
It's starting to really bother me that prematurity is constantly colored as a severley disabled life. This is simply not the case. Are their brains affected...yes. Does this translate that all children mirror the lives of your specific child/ren...no.
Some are in special ed, some are not. Some can walk, some can not. Some have seizures, some do not. Some have shunts, some do not. Some have sensory issues, some do not. I could go on and on. The fact is no research can tell us the fate of an individual child.**
to me this here is along the same lines as what i was saying, maybe it was worded different and that is why it didn't get the response i did, in fact it didn't get one at all..hmmm..and helen i have said before that some things you post about are helpful, never did i say that others are bothered by your post, i did email you before and ask your opinion on therapy, that was something that interested me and i knew if anyone had researched it you would be the one, i appreciated the advice you gave just as some appreciate the studies you post..it has nothing to do w/me being uncomfortable about anything that kellar may one day face..calm down? helen it takes a whole lot more than disagreeing over a computer of all things to get me worked up, i actually find that a lot of what you have to say makes me laugh b/c you totally read into things in your own way but obviously thats all part of trying to discuss things over a computer..
What is this rehashing? It is getting old (for me), the way that so many of the discussions come back to resuscitation standards and NICU monies, and the "burden of care" that may follow.
Look, there is an elephant in the room, standing next to the Emperor who has no clothes. And we had been ignoring the elephant and the Emperor--worse yet, implying that they are miraculous.
We have not been willing to confront that the survival of the most fragile, the preemies, is fraught.
Helen is the messenger and the one willing to confront these issues.
And we are not so willing to be confronted. The specialty of neonatology is not so happy to be confronted either.
Here is an anology: Way back when, the nuns in the Catholic schools rapped the knuckles of the kids who were daydreaming or disruptive, or so the stories go. We accepted that and called it "discipline". But the modern day word for it is abuse. No one can strike a child with impunity.
We have accepted wholesale "what the doctor says, goes". But that is an acceptance of authoritarianism. It implies that the patient/parent cannot judge or decide for themselves.
More importantly, the docs who say or imply that catch-up happens by age 2 and that everything will be all right, are wrong. Preemie syndrome happens. Autism happens. Learning disabilities happen. The divorce rate is sky high. The resources to support the ex-preemies are hard-won. Forty percent will never live independently.
The impact on the family unit, on healthcare and on educational institutions is huge. Even those of us with kids who are doing quite well must acknowledge that these other preemies and their families are our brothers and sisters and nieces and nephews, and we must share in their difficult lives in some ways.
Twenty-six percent (autism) is an epidemic. Forty percent unable to live independently is an epidemic. These epidemics impact us all--or they should, if we are ethical people.
Please, let the defensiveness be over and done. We share in the poor outcomes, and owe support and empathy to the families of those ex-preemies. If we are able to get the word out, and/or confront the medical complex, we should do so.
Helen is the parent of a child with a poor outcome, and as such, she deserves our support. She is behaving like a person with a cause. And she is raising the consciousness of many--some of whom may indeed be sadder but wiser.
If we choose to focus on our own good outcomes and happy families, we are proving the "insular" theme, which was the original thrust of this week's post.
Chris and Vic
I understand and agree with much of what you said Chris.
I do want to say though that we are not necessarily ignoring the suffering and hardships that occur because our choice was to save the life as opposed to let it go or because we recognize that outcomes are different for everyone.
For one, the disabilities are on a wide range. But more importantly, a child's disability is different for every family. In other words, even if the dx is the same, the impact on the family, or the way the family views their lives can be extremely different.
I know my children will live with the effects of their premature birth..I don't expect them to ever "catch up" because the effects are forever...in some way or another...but this can only be discovered over time. Perhaps that is why Helen posting studies doesn't bother me...I'm not afraid to confront it because I'm always looking for it. I take a sigh of relief when we accomplish or overcome something and wait, work, and advocate when we run into issues.
I guess the tough part is no one could know BEFORE HAND. 26% of premature children show signs of autism by age 2. Meaning 74% don't...as a parent with a preemie, you hope yours is part of the 74%. If they're not does that mean your choice was wrong? No; because how could you have known? 40% never live independently...is this something some families can't face...probably. Does this mean the choice not to resuscitate should have been clear...no. Some people will hope their child is the other 60% and yet still accept that if they're not they will make necessary arrangements for their child/ren. Some people don't determine life versus death of a chance of never independently. Some people do. Some marriages will fail...others won't. It's all about your personal feelings as parents, which is why I am now understanding the choice not to resuscitate. For some, the risk of having a disabled child is too great. And others don't see it this way.
My point is let's not paint the life of a preemie, or any disabled child as simply a life of pain and suffering. Talk about your individual child/ren as much as you want, but prematurity is not a catch-all for pain and suffering and a life not worth living. Let's not reduce them to a cost, or to a burden on society, the education system, or on their families. Let's admit that the choice to resuscitate or not is a hard one...with no clear answers about an individual's outcome. A parent should be able to speak on how they view life and every individual family is going to see their lives differently regardless of the range of disabilities their child/ren have.
I especially like your line about Vic...from the toliet, to hospice, to the honor roll. I never wish to diminish the hardships disabled children/adults face, but I do like when we are given a glimpse of the individual and the joy that they do bring to families. Because for many of us the choice has already been made, our children are here, living and breathing. In spite of the pain they may face, or their inabilities, it's nice to sometimes remark on their accomplishments, interests, and abilities.
Sorry I typed that without proofreading...I skipped some words, and that should read "discount" not diminish...I wish I could take away pain and suffering.
"No, one would be seeking damages for an assualt, not for an outcome."
Helen, the damages for which you compensated are for an injury caused by the tortious act. Damages are either general (eg pain and suffering) or special damages (eg, medical bills) - and they are established based on the injury. The injury is essentially living. You are not claiming that any procedures were performed negligently; you are claiming that even when procedures are performed perfect;y, medical intervention itself causes irreparable harm.
So again I ask why are you so eager to distance yourself from the common legal term "wrongful life?" Why is it offensive to you? Especially because part of your advocacy is confrontation of the medical establishment - presumably their patience with your banter wanes at some point and to get their attention you need the threat of legal action. Legal action isn't much of a threat without being able to prove damages.
In the case of neonatologists committing medical torts on our preemies that are commited when DNR orders are ignored or the wishes of the parents are not obtained, the damages are for ?. Wrongful. Life. The decision would have been/was to let the baby die, and that decision was not honored.
Are you also offended by the term "wrongful death"? That is the theory of recovery in the case of a medical tort (assault/battery or malpractice) resulting in death.
C&V, I don't have much specific to say, except that just about the only thing you said I agree with is that the re-hashing is getting old.
I totally get that you and Helen feel that there is a message to get out and that you are providing a great service by being "willing to confront these issues."
As I have beeen trying to articulate, your confrontation has a really ugly underbelly. Don't think for a minute that children can't grasp this. Or that special interest groups like insurance companies won't latch onto this as a way to ration care.
I see so much value in the support of a group of parents who share the bond of having premature children. I also see a lot of value in reaching out the the neonatology community to discuss ethical and medical issues surrounding prematurity.
BUT--and this is a huge but--Helen does not speak for me on any level. Her brand of advocacy IMO is doing much more harm than good.
I suppose I'll have to find my own voice in this and speak independently, instead of in this sort of forum. I will have to think more about how to get my own message out.
Helen Harrison
To Anonymous 9:10:
Back in the 19th century, certain people were considered "un-duel-able", meaning that their insults were too stupid to warrant a challenge or a duel.
I am thinking you are "un-duel-able."
My advice to you: "Go to bed, sleep it off, get over it."
Helen
TPD,
I strongly feel your input should be present here. Without opposing views things here would be extremely one sided, and what then would the benefit be? Afterall, there are babies born below 26 weeks every day. There are parents who are going to choose resuscitation when given the option. There are parents of disabled children who may read and benefit from your words.
So just as there is a place for those who feel strongly about their opinions, there is certainly a place here for you to share yours.
From Helen Harrison
So, is "TPD" Anonymous 9:10?
Helen
**I suppose I'll have to find my own voice in this and speak independently, instead of in this sort of forum. I will have to think more about how to get my own message out.**
you are getting your message out..there are plenty of people who come here who may find value in what you have to say and there are some here who resort to being very ugly and saying hurtful things that are really out of line, but either way both sides need to be told and there will be some who see your point and some who won't but as another poster said if there aren't others like yourself who are willing to come here and offer a different opinion things will be very much one sided...
TPD here. And above on all the wrongful life posts.
I'm saddened that neonatologists have to worry about being sued for saving an infant's life, and for the unborn children who might not be saved as a result. I'm even more sad for the surviving children who learn of such a lawsuit brought by a parent. I am not sure why Helen so easily dismisses these negative consequences.
23wktwinsmommy, thank you for your kind words. I probably can't break my addiction to posting on topics I feel so passionate about. I was thinking maybe a blog would be a good idea, but right now I'm pretty strapped for time (and not using it well at the moment!)
Helen Harrison
To Chris and Vic who said:
"Twenty-six percent (autism) is an epidemic."
According to the CDC in 2005 (latest year for available data) there were 4,138,349 births.
1.49% of them were very low birthweight infants (<1500 grams) which would give about 61,661 VLBW infants born that year.
If 26% of them are autistic, as the study we've been discussing suggests, that would be 15,415 additional autism diagnoses in the US/year due to NICU survival of VLBW infants.
Does anyone have good figures on the annual rates of autism diagnosis and their recent rise?
Helen
Chris, it seems you are always the voice of eloquent reason. Thank you for you well thought out words.
TPD - it seems to me you are only able to thinly mask the reality of what is bothering you here - the "pro-choice" vs. "pro-life" issue. For the record, the "I'm Not Sorry" blog-mistress linked to this blog (which is how I found it) because of a debate which had been happening around selective reduction/termination of fetuses in multiple pregnancies. She specifically pointed to this blog as an example of the poor outcomes that can occur for premature babies (which is almost always the case in mutiples, with higher multiples often being extremely premature), and why she felt the parents of a certain set of unborn sextuplets were unreasonably putting their children's lives and futures at risk by not selectively reducing/terminating, against medical advice.
Link here: http://imnotsorrydotnet.
blogspot.com/2007/06/
this-makes-me-sick.html
(see comments section for link to this blog)
Giving information should never be considered "absurd". As we are not doctors, we should be given as much information as humanly possible in order to make better informed decisions. Currently, "informed consent" is often a joke, as patients do not have the requisite background to make a truly informed decision. In cases such as premature birth, were timeframes may not be as urgent as in emergency surgery, for example, doctors should go out of their way to provide information so parents and parents-to-be can make better decisions, or better understand the implications of a variety of decisions.
"Do you see a lot of blogs out there dedicated to ruminating in the long-term effects of down's syndrome, childhood cancer, or other disorders?"
I can't speak for those diseases/disorders specifically, but I can tell you there are literlally thousands of medical support forums and blogs out there, dealing with any number of issues from mental health, to infertility, to genetic disorders. The overarching theme of this blog is to provide information and support to those parents who are going through similar things as Stacy, which is similar to the purpose of most other medical blogs/forums.
An example which perhaps won't set off your "pro-choice" radar: For a while, the new crop of anti-depressants called SSRIs were thought to be virtually side-effect free. Subsequently, it has emerged that there are some extremely rare, but very real and dangerous side effects, and a whole new problem called "SSRI discontinuation syndrome", which again is only serious in extremely rare cases, but with short-term unpleasantness for many. Yet, many doctors do not feel the need to discuss this with their patients, and are themselves ignorant of the new information on this issue. But the depression support forums out there are filled with information about this, and about what to do in case of such symptoms occuring - they provide support and understanding that the medical community currently does not, or is not able to.
Why should you see this blog any differently? Its not like Stacy and Helen and Chris are making up lies - Helen is absolutley scrupulous about citing her references. They are the ones telling the hard truth, and if some out there are not ready to hear that, then go read another blog. They are the ones providing support and information that the medical community does not (in some cases).
From where I sit it appears that those who see things differently than Helen are the ones being attacked. I have read back through and seen where if one post of a different opinion then the reply to that post appears to be one of haste. To tell one that their opinion is basically stupid is uncalled for, so many want to side with Helen and how she is only telling it like it is, yet the few that are very open about how they see things differently are supposed to sit back and just allow Ms. Harrison to say what she pleases no matter how rude and uncalled for it may be, all they are trying to do is tell it how they see it, is that so wrong?
I haven't seen anyone stand up and tell her that some of her comments to others are out of line, and whether you want to admit it or not we all know that some are very rude and uncalled for yet some jump to her defense as if she were the one being attacked when it appears that she is actually doing the attacking and these other people are only trying to defend themselves.
People may not agree with what she post, I don't know if agree is even the right word because I don't think they are trying to say that the studies are wrong, just that you can not group all preemies into one as there are several different outcomes. Why should one have to go and read another blog just because they don't see things as others do, that makes no sense at all. We are all different, no 2 people think alike and difference of opinion is ok it just doesn't seem to have a place with some who post on this blog.
From Helen Harrison
To Anonymous 7:17:
I was responding to someone who had just accused me of advocating genocide, of "pseudo-scientific quackery," and of believing in the legal concept of "wrongful life." This person also disputed the accuracy of the studies I had discussed. S/he would not let go of the "wrongful life" slur and was becoming increasingly incoherent.
Charcterizing this person's views as merely "stupid" was, I think, an act of restraint on my part.
Helen
"Charcterizing this person's views as merely "stupid" was, I think, an act of restraint on my part."
But that still doesn't make it okay does it? Maybe it would have been wiser to just ignore it or go read another blog? Isn't that what is always told to other people if they reply in a way that someone else finds offensive?
That's the point. What gives one person the right to call another person's argument/point of view "stupid" (which is really childish if you ask me...my students at the elementary school love the word) yet that same person being called stupid is told they should read another blog if they reply to a comment in a far more diplomatic way??
Nancy
See that's the point I am trying to make, it's NOT ok yet some way somehow it will be made out to be ok because Helen is the one doing it and for whatever reason she all of a sudden becomes the victim, the one that people who just aren't ready for a dose of reality turn on.
They seem to be the ones constantly being accused of being on the defensive side but so far the defensiveness has been shown in Ms. Harrisons replies to others whether it be something they have actually went through or just something they feel strongly about.
TPD here.
"all they are trying to do is tell it how they see it"
Exactly what I am doing. Obviously it is just about 180 degrees from how Helen sees it.
Helen, You said:
"I was responding to someone who had just accused me of advocating genocide, of "pseudo-scientific quackery," and of believing in the legal concept of "wrongful life.""
I think that sums it up quite nicely! I don't know you personally, and I don't have one clue what you believe in your own mind. What you post on the Internet, however, definitely leads me to those conclusions. The terms I use are well-defined and even though *you* may not use them to describe your particular form of advocacy, I believe the (perhaps intended, perhaps unintended) consequence of certain actions that could be taken based on that advocacy would be aptly labeled with the terms I have chosen. Only you know whether that is your intention.
You lament the fact that families of purportedly wrongfully treated premature infants sue and win damages and the court refuses to enforce the damage award.
You are clear about your views on <= 26 weekers as a group.
I can't help it if you are not familiar with specific legal terms or the elements that are proved in a given cause of action and the basis for damages--thus rendering the discussion incoherent to you. Maybe you should become more familiar with such things - that would be up to you of course.
Cheers!
TPD (again).
My purpose is to highlight the fact that Helen you are often act very much like some of the neonatologists you take issue with: you accuse neonatology of being insensitve at best and intentionally harmful at worst (eg, committing assault and battery).
Yet you proceed with your form of advocacy seemingly without regard to some of the broader consequences. At best I often find your tone to be rude and insensitive to others (though protests are met swiftly with "go read happy blogs, I am just telling it like it is")--at worst you advocate what is tantamount to genocide and the expansion of legal enforcement of damages for wrongful life.
Helen Harrison to Nancy who said:
"Maybe it would have been wiser to just ignore it or go read another blog? Isn't that what is always told to other people if they reply in a way that someone else finds offensive?"
***
I am here on this blog at Stacy's invitation and with her encouragement.
It is easy to ignore "views" posted on this blog that merely show ignorance (and I often do).
But when anonymous posters come here to hurl insults and slanders at me by name, I feel I must respond. If I do not, they will gloat that I have not objected to their lies and mischaracterizations, which they then feel free to throw around the Internet.
If I do respond, they whine that I have hurt their feelings.
I totally understand where these people are coming from: they are terrified about their children's futures and their own ability to handle the difficulties that may come their way. Most seem angry at the world because they have a disabled (or probably disabled) preemie, and they need someone to lash out at. A few are free lance (or, perhaps, professional) anti-choice ideologues.
If it's not me they are attacking, then it is someone like journalist Caryl Rosenthal.
These people wander in packs around the Internet harassing others who dare to discuss prematurity in an adult and honest manner. They are frightened of the facts, and they think they are somehow "defending" preemies by shouting down anyone who presents the facts.
They thrive on melodrama and cyber-tantrums because they cannot argue an issue on its merits.
The thought that any of this is going to make their lives (or their children's lives) better, is, dare I say it(?), "stupid" but, most especially, it is profoundly sad.
Helen
Kudos Helen. Much more clear and eloquent than I.
Keep up the fight, as it is a good and noble one.
I have to say Helen, I am completely appalled by your last comment. I would copy and paste the things that I find mind boggling, but I just don't have the time, nor the patience quite frankly.
My quote was to ask why it is that you don't heed your own advice. Is it because Stacy has invited you here? The simple fact that she has not passworded her blog is an open invitation for all to read. So my response to that is that you should never then tell people to go read another blog if they don't like what you have to say. Besides, I find that to be a serious cop out of a response anyway.
The person that you referred to as "stupid" was going back and forth with you in what appeared to be a very civil discussion. At least until you decided to throw out the insult. I am pretty certain that when I read her comments, I didn't find any slanders or insults thrown at you. Challenges maybe and a vast difference of opinion. But no insults. "Stupid" was the first one I saw, and that came from you.
You say time and time again that these parents are terrified and doubt their ability to handle what may come their way. Yet time and time again, they have said to you that they are not terrified, and they are aware of the possible outcomes. You make that perfectly clear in everyone of your responses with the research that you post. To be truthful, if any parent reads what you have posted, that can't ever claim ignorance as it is all there in black and white. Yet, for some reason, you still hold on tight to this idea that many of the parents here are scared and angry and they need to lash out at someone? I am baffled by that. Can't you take a discussion and difference of opinion at face value and consider it to be just that, a difference of opinion? Rather than calling it fear and anger and ignorance?
As for the Caryl thing, yeah she really pissed off a lot of preemie moms. However, I think there was a little crusade going on at the narof message board as well to write to her and cheer her on. May I ask how that is different? I understand that many of the things people said to her you found to be offensive and threatening, as did she. That aside, there is no difference in one group of mothers writing to n author to express their feelings and another doing the same thing. You can't have it both ways.
I think there was an adult an honest discussion occurring. Then someone's ideas were called "stupid." So in my perspective, it wasn't the people wandering around the internet in packs that couldn't carry on that adult conversation.
There is a whole heck of a lot of merit in the things you have to say. However, I'm sure you have heard the old cliche about how to catch some flies. I'm not saying that things should be sugar coated. But if I want to get people to have a discussion with me and start to understand my viewpoint, I certainly don't refer to theirs as stupid.
TPD here.
Helen, I don't think you can see any negative consequences that flow from your brand of advocacy. In that way you are like the neonatologists you accuse of the same thing--failure to appreciate consquences of medical intervention just because it's possible.
That you do not see this as ironic (and the basis of a huge loss of credibility) has nothing to do with me.
I am an opinionated mom, that's it.
From Helen Harrison
To Nancy:
Stacy has explicitly, several times,in writing, on this blog, asked me to stay here and welcomed my input, despite the virulent and annoying attacks that you and various anonymous posters seem compelled to throw my way.
Perhaps you don't consider being accused of promoting genocide and "wrongful life" suits (despite patient exlanations of why this is not the case), of dispensing "pseudo-scientific quackery" (when I try scrupulously to present factual information) as "insults." And you say you are a teacher.
On narof we share information; we do not plot against others.
But when you and life-minded others choose to single someone out to attack and threaten, we do like to let your victim know that not all preemie moms are irrational and full of hate.
This is a very different matter.
Helen
Helen Harrison says:
That should read "life-at all-costs minded" others
Helen
So because Stacy has explicitly asked you to stay and welcomes your input, that gives you the right to be blatantly rude to someone? I'm sorry, but I don't feel that way. And before you interpret this as something else, nor do I agree with several of the comments that have been thrown at you. I am pulling out this one in particular as it was the most blatant expression of ignorance that I have seen here. (Please note, I do not read every single post, or every single comment)
I would also ask that you please refrain from saying that I myself have thrown virulent and annoying attacks at you. I have never done any such thing. And if you feel that I have, I implore you to find a comment that made you feel this way and point it out to me. I am not in the business of running around the internet throwing insults at someone that I do not know and never plan on meeting if I can help it.
Yes, I am a teacher as I have stated before. As such, I did not see what the poster said as an insult. I see it as an opportunity for one person to demonstrate to that person how that is untrue. When I work with children, I promote children having differing opinions. I also insist that both parties respect the opposing opinions. What I will not tolerate is one group calling another group's ideas stupid. Like I said before, it is childish.
On narof, yes you do share information. But you can not slam one group of parents for beginning a letter writing campaign when a group that you are part of did the exact same thing. Although your purposes were vastly different, it was still the same course of action.
And in your final paragraph where you insist that myself and people who think like me are singling a person out with the sole purpose of attacking and threatening, you need to research a bit. Never, did I write a letter to that woman. Do not include me in groups when you do not have the proof (something you can appreciate) to back a statement like that up. You know what they say about assuming things right?
The only reason that I responded about the Caryl thing was because you mentioned it.
Helen - I have a feeling that you are fighting a losing battle here. Not because what you say is not valid, but because the internet is generally a breeding ground for conservative small-minded trolls who enjoy nothing more than a juicy flame-war.
A troll is someone who refuses to let go of a point when you have clearly and eloquently clarified your position. A troll is someone who consistently posts anonymously and expects everyone to somehow know who they are. A troll is someone who resorts to ad-hominem attacks because they don't really have a good point. A troll is someone who keeps dragging up the same malicious point over and over when it has clearly been previously disproven. I have been the "victim" of such a person and trust me when I say its not worth your time and energy. I love your use of the term "unduelable"!
And by the way TPD, your use of the term "genocide" is truly offensive to those who have been the victims of a genuine genocidal war.
Don't feed the trolls...
Helen Harrison to Nancy:
I don't know what you have personally done vis-a-vis the cyberattacks, only that you are defending others who commit them.
And yes there is a big difference between launching an attack and defending a victim.
There is also a huge differences between "respecting opposing opinion" (which I always do when it is rational and well-argued) and putting up with irrelevant, incoherent slurs that display a malicious disregard for the truth.
Helen
Helen Harrison to Dee who said:
"Don't feed the trolls..."
***
You are absolutely right about trolls! It is a shame, however, to allow them to come on a serious blog like this one and get in the way of honest discussion.
I'm always torn between ignoring them (I've been battling trolls for over a decade) and not letting them "win" through intimidation.
I would very much like to get back to substatantive discussion among grown-ups! And I want to say that I have particularly appreciated your contributions to this discussion.
Helen
"I don't know what you have personally done vis-a-vis the cyberattacks, only that you are defending others who commit them."
You don't know what I have done personally because I've not done anything, so again, I will ask that you do not lump me in with people. Secondly, I am not defending them. I was merely stating the issue that I take with your comment and why I found it to be rude. If you read one of the last comments I made, I was clear to include the fact that I do not agree with all of the comments that have been made against you. So to say I am defending someone is absurd. I stated my feeling on something you said, and it has turned into this. Just as it always does.
As your last statement, I will agree to disagree with you as no matter what I present or bring to the table, it isn't going to get you to see my point of view.
**A troll is someone who refuses to let go of a point when you have clearly and eloquently clarified your position**
strange but this could actually refer to both sides! as neither side is actually willing to let something go, if helen doesn't agree w/something she tends to keep on with reasons why she sees it the other way just as the other person will continue to tell why they see it differently...it's just a matter of give and take, there are times i am not the best at this and i admit it...
dee might i ask why you feel that those who are trying to prove their point, or maybe trying to explain why they feel a certain way are considered to be one who enjoys a flame war? would you say that helen is a guilty party in the flame war since she has continued to try and defend herself, afterall i feel that those you are accusing of being trolls are acting no differently...there have been things thrown from both sides that are uncalled for...
"I totally understand where these people are coming from: they are terrified about their children's futures and their own ability to handle the difficulties that may come their way. Most seem angry at the world because they have a disabled (or probably disabled) preemie, and they need someone to lash out at."
I don't know if I get lumped into this category but, just in case, I wanted to clarify how *I* feel about having 'probably disabled' to some degree preemies. First, I'm not angry at the world. I'm not made at neonatology either.
But I am terrified. Not terrified that their father and I won't be able to adequately care for them, but rather terrified about how they will be treated by others in this world. Terrified because some believe that there is something terribly wrong with being 'different,' something terribly wrong with not being able-bodied or of average intelligence. Terrified because I eventually have to release my children from our loving home out to the world...a world that may not accept them for who they are. A place where people are vocal about how they feel children born at my gestational age would have been better off...dead. Terrified because I can't defend them against every ignorant comment that's made. Terrified because I don't know if I am strong enough not to lash out at those who seek to ridicule my beautiful children. Terrified because some parents don't teach their children about acceptance and compassion for others, and these children may unitentionally (because of their parent's ignorance) hurt my children's feelings.
So yes, I'm terrified. I'm terrified because of the way some people view those with lower than average IQs, those with an abnormal gait, those with autism, those with behavior issues...those who are different.
That should read "I'm not *mad* at neonatology either."
And it should read "at my *children's* gestational age."
Sorry for the typos.
to 23wktwinsmommy :
Having raised a disabled son for the last 11 years, I can tell you that your terror is justified. My son is an amazing person, and many, many people will lose out, because they cannot/will not take the time to see that. Unfortunately, to combat that attitude, we have raised him with such a strong sense of self that he is a *teensy* bit obnoxious, lol.
I keep myself anonymous on these blogs, not to hide, but to protect him. He has a right to privacy and dignity, and at his age he and his friends are all computer literate (probably more so than mom!) If he had ANY idea that these discussions were even taking place, the emotional damage would be truly devastating.
To go back to the original "Insular" post - it is good "brain food" but it is not something that I can wrap my mind around emotionally. All of my choices that were made when my son was in the NICU were made based on HIS welfare and his medical condition - certainly not on the theory that if he were NOT treated, that 1000 more children below the poverty line would recieve routine medical care for 6 months. Don't ask me - don't ask ANY parent to weigh the value of their child's life against the inflated cost of the medical care. It just can't be done.
Raising an impacted former preemie is difficult. At times it can be one of the most heartbreaking things that anyone could ever undertake. It can also be one of the most rewarding. I came to this blog originally to find others like myself, who truly understood the ins and the outs of day to day life. I wanted a place where I could gripe, and complain, and rail against the unfairness of it all, without worrying about being misunderstood. That can't happen here. To complain is to equate oneself with the side that believes that those of my son's gestation / diagnosis (26 weeks /Bilateral Grade III/IV IVH) should not have been allowed life. I say "allowed life" because in his case that is the literal truth - it wasn't forced upon him, instead his attempts to survive were supported. Had he ever been attempting to die, that would have been supported as well.
The comments on this blog are out of control, we are no longer just beating a dead horse, we have all headed to the glue factory to find more! 90% of the commenters here seem to believe in a parents right to choose, the differences seem to come in with WHAT the opposing sides feel is the "right" choice. NEWSFLASH people - there is no "right" choice!!!!!!!!! Each and every child born is an individual human being, from the moment of birth, and each has a right to be individually considered.
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