Thursday, May 14, 2009

The Financial Impact of Prematurity-In The Media

Some of the on line preemie support groups, and various blogs, have been turned inside out this past week due to some recent media coverage of a few preemies.

First up... The Freemans. They were featured on a recent episode of The Doctor's. Their blog (seems to be mostly authored by Dad) is quite popular among preemie blogs. Kayleigh was born 3 months early in June of 2008. The show featured their story due to the financial impact that prematurity has played in their lives. They were doubly hit when the economy crashed and they were on the verge of losing their home. Many of us have been in that situation. I've been very open about our financial hardships, beginning with the NICU bill that was not covered by insurance and continuing for the past 10 1/2 years of medical bills due to on going care. Their story is NOT unique.

So why the buzz in the preemie world? Well, they used their blog to solicit donations all the while never disclosing how the money was being used. Some have commented that they never sent thank you's after they've received said donations. I am not one of those who donated so I don't feel qualified to comment on any of the above.

What I do know is that many of us are one more procedure away from being completely broke. Unlike decisions we make on our own medical care, as parents we cannot chose to withhold a medicine or a procedure because we cannot afford it. They are our children and we do everything we can to improve their quality of life.

I think the frustration in the preemie world over this family is that "their story" is "our story" too. Many of "us" need help but no one is beating down the door and tossing cash our way. Some people felt that the family was still spending money on extras (getting nails done, etc) and they shouldn't be doing so since they were receiving donations. (Since I don't know how those extras were paid for I also won't be commenting on it)

Some states have wonderful resources such as SSI and medicaid. But what about those who live in states where income is used to determine if you qualify? What about those who live in states without waivers? What about all of the bills incurred after the NICU? Co pays? Medicines? Living on one salary because your preemie cannot be in day care? It all adds up.

All in all the show did a fairly good job of showing what life is can be like for people without insurance (or under insured) when a crisis hits.

At one point Dr. Sears talked about a late night encounter he had with a father in the NICU. The father was questioning whether or not it was all worth it.
"I know as doctors and pediatricians we try to do everything we can do for these little babies but sometimes we forget what happens outside of the hospital, what the cost can be for the whole family. This reminds me of a story. I was spending the night in the neonatal intensive care unit with a family a few years ago and very similar situation as your guys (pointing to the Freeman's). The baby born 3 months premature, barely over a pound and you know, the child was only a few weeks old and had all of these procedures and surgeries. The dad came in in the middle of the night and we were sitting there together and the dad just kind of broke down and he said, "You know, is this going to be worth it? You know I don't know if we can pay for all of this." and seeing their little baby go through all of these things and not knowing and probably even doubting if there is even going to be a good end to all of this. It's just really tough."


At that point I held my breath. He seemed choked up, like he really wanted to say what was on his mind. But it ended there and I let out a sigh. Although it wasn't the right time for that kind of discussion (being that it was a show on insurance), I really wanted to hear what was on Dr. Sears' mind.

As for Kayleigh... she passed away on May 11th, having never left the NICU. You can read her blog here... http://kayleighannefreeman.blogspot.com/

Next up (in a few days) will be a post about the People Magazine article on the 6 micropreemies. Please hold the comments until then as I'm sure you all will have a lot to say once you hear what I have to say.

82 comments:

Sheila said...

I hadn't heard a word about this preemie or her family. Unfortunately, I think a lot of kind hearted folks who give money in situations such as this (vs to an established and legitimate charity) would be surprised, or saddened or angered by the way their donations were used. I guess my question to those folks would be, did you give from the purity of your giving heart and if so, then you shouldn't have any lingering strings to your donation. If you gave for a specific and solitary reason, then shame on you for not doing your due diligence to verify that your purpose was conveyed and complied with. I think Stacy's point about this family being an archtype for many, many preemie families is dead on - and the fact that those families are suffering in anonymity probably rubs them raw. The fact is that the financial cost of prematurity is one of the things which the medical industry has done a magnificent job of covering up and making it a poisonous topic - anyone who brings up the issue is blasted as a pro-abortion baby killer. Meanwhile, all across America families are divorcing, losing their houses and their minds because the cost of prematurity doesn't end at the NICU door.

Anonymous said...

One place to examine the effects of prematurity and its cost would be those circumstances in which people make risky choices that lead to prematurity.

We've heard about alcohol and drugs. Yet, no one talks about how IVF and the proliferation of multiples has impacted the numbers of infants in the NICU. Because IVF usually comes form middle to upper class couples, it appears politically incorrect to discuss as a problematic cost to society.

Anonymous said...

I will hold my comments specifically on most of what you said but I will say that specific family? They make me ill. That baby was brain dead for weeks, they knew it, and yet they let the saga go on for weeks till the day before the show. There is a special place in hell for them.

Sheila said...

I am confused about how anyone found out about this family in the first place ? Stacy - how did YOU hear about them? How would a stranger know that this NICU baby was brain dead ? HIPAA laws would preclude the treating staff from saying anything, and if I'm reading between the lines of the responses - the parents either didn't know or didn't say. After more than 14 years of reading preemie parents interpretation of the condition of their child, I never have a shortage of parents who describe their child in a way that makes me realize that they do not or can not or will not embrace the true nature of their childs situation. Whether that is because of their human limitations or because in every NICU you will find staff whose glasses are always half full and viewed with permanently attached rose colored glasses and staff who try to describe the situation honestly - and unfortunately, many parents look at the second group as Dr-Doom-And-Gloom trying to crush their hope.

I just don't think anyone really knows the truth behind media families (though I don't know if this family qualifies as a media family since I haven't seen anything in mainstream media about them).

Anonymous said...

TPD.

I don't get the outrage.

All of us are just a medical emergency away from financial disaster. Not just parents of premature babies, but every single person on this planet at every moment.

This family asked for donations and attention - their attempt to cope - if people are willing to help by sending money to someone they don't know who puts up a website and gets on the news, great. If it helped the child at all, even better.

The poor girl died, and as parents of premature children your response is to be jealous and angry and circle the wagons to condemn the parents?!?

WOW.

Anonymous said...

TPD. My comment about jealousy and anger was not just regarding the comments to the post, but to the post itself. The "what about me," "my preemies ruined my financial life, too, and my kids are still alive, so I have to keep dealing with it!" sentiment is really ugly.

Anonymous said...

Sheila,

Tha parents OPENLY blogged that the drs told them the baby was brain dead but they wanted to take her home anyway. I swear I am not making this up. I wish I was. Go take a look at the blog. Its all there... I have followed the blog from the start and was appalled at the direction it took.

Anonymous said...

Sheila,

Straight from their blog..


"But, something happened in this final surgery which caused Kayleigh to not get enough blood and/or oxygen to her brain causing her Cerebral Cortex to be damaged and considered flat, no waves, not working, or no activity. "

Sheila said...

The "what about me," "my preemies ruined my financial life, too, and my kids are still alive, so I have to keep dealing with it!" sentiment is really ugly.

Hello Anon,

I'm confused - why do you feel this is ugly ? Don't you feel it's a legitimate question that someone who was coping without begging for public donations would ask ? That they would see this as a reasonable opportunity to point out that - its NOT just this one family that is impacted this way - it's not "what about me" as much as they are saying "there are LOTS of us" .... I think its far from ugly and very truthful and helpful to preemies everywhere to let their realities be part of the same consciousness that thinks that 'miracles' are "free". It seems wildly skewed to flood the media with one side of the story only - I think it leads to the isolation and depression and often violence that hallmark preemie families. They feel nobody knows or cares. I don't see this as condeming one family who broke the veil of anonymity (and maybe I just don't know where to look to find the poisonous words) - I think that most preemie families would just say "yep ... been there, done that, have the goodwill t-shirt to prove it"/

But again, I fully admit that before reading Stacy's post - I heard not a word about this family. I do find Americans in general to be pulling back on the charity front - a good example is the vitriolic hatred hurled at "octomom". People want to see personal responsibility, and initiative before opening their check books - or they want to see the ruins of your house, or some tangible evidence of your true victim status.

Anonymous said...

TPD.

Sheila, I definitely think it is a question most people ask themselves...in private...along the way...

but to get permanently stuck there (even in the company of lots of others who see themselves as vicitms, too) is not a solution, I think it is a problem, and it may be *the* difference between viewpoints that I have been struggling to understand.

Anonymous said...

Helen Harrison wonders:

What *are* you talking about, TPD?

Who is it, specifically, that you think is "permanently stuck" in victimhood?

What on earth does acknowledging that an injustice has occurred or that a scam has been perpetrated have to do with "*the* difference between viewpoints?"

What "difference" exactly are you talking about? Are you suggesting only people who are "stuck" have certain "ugly" -- to quote your word -- viewpoints?

This sounds to me like recent political rhetoric about the need to "move on" and not look too closely at torture pictures,or the lies that got us into war, or the abuses of power that occurred, or at the financial crimes that threaten to bankrupt our country. To do anything else, the critics imply, is to indulge in victimhood, partisanship, populism, or worse.

Many families of preemies have indeed been victimized -- as have their children. This is recognized by many who are *not* parents of preemies themselves and have no skin in the game. These people, I would suggest, are not "stuck" anywhere.

The philosophy of "walk on and avert your eyes" or just "look at the half-full glass" (which the stats show is *far* from half full) may help some neonatologists feel better about themselves (though I can assure you, many have had and are having wrenching second thoughts about their profession!).

I suggest we need to look at all the problems openly, honestly and completely.

Why do you object? Why do you want to blame the messengers?

Helen

Anonymous said...

TPD.

Helen, It is funny that you think I am some sort of right-wing political activist.

Anonymous said...

TPD.

How is it that one family's crisis and pain, as expressed through a simple blog, becomes all about what the parents of *other* premature children didn't get but are entitled to?

Add to it the consipiracy of the media (the neonatologists, the hospitals, the obstetricians, the reproductive endocrinologists, the pro-lifers...) to victimize these parents and children by suppressing the "truth".

I am not blaming the messengers for anything (who are they, anyway?), I am saying that if these things are premises of the message, then I don't even need to get to the specifics of the message, it will be inherently flawed.

Anonymous said...

Helen Harrison responds to "TPD:"

Actually, I know full well you are not a right-wing political activist -- even though on this topic you tend to reason like one.

In fact, I'm considering when and whether to put an end to this silly game and reveal not just your politics, but also your professional interests, your gender, even your your real name. But I'm hoping you will come out of the closet on your own.

Till then,

Helen

Anonymous said...

I live in NC, the same state as the Freemans. In NC, babies born at less than 1000 g automatically qualify for SSI and Medicaid. The SSI is only $30 a month while the child is in the NICU, but Medicaid will cover the NICU bills. We qualified for my son, a former 24 weeker born at 735 g, because of birth weight even though our income was over 100k a year and we have great health insurance. Medicaid picked up the $1800 our insurance did not. Even if the child is more than 1000g, they can qualify if "institionalized" ie in the hopsital more than 30 days. This will stop once the child comes home if you do not qualify financially. I never understood why the Freemans did not get SSI and Medicaid. Levine is a big children's hospital and surely they have a NICU social worker to help with these things. The SSI would not pay their household bills, but they are claiming finacial hardship from all the medical bills too.

Sheila said...

TPD said but to get permanently stuck there (even in the company of lots of others who see themselves as vicitms, too) is not a solution, I think it is a problem, and it may be *the* difference between viewpoints that I have been struggling to understand.


I'm not sure if you are describing yourself as permanently stuck on this topic or if you were trying to say that the families you described as having "ugly" thoughts are stuck. I really don't see any difference between the polarized ends of an argument, and honestly don't feel that either end is interested in resolution, they're both just trying to be the last or loudest voice in the room.

There are real, serious, tangible problems that exist on every level that we have inserted our scientific will before our ethical and intellectual reasoning. We do things simply and only because we can and never, ever consider for a moment if that is the correct thing to do. Maybe it is, maybe it isn't, maybe some middle ground will be where 'correct' lives - but currently, we have an unchained, untrained and dangerous animal loose in our excuse for health care. The reason we have made almost no progress is that we have not yet amassed enough energy in the middle, we are still in the stage where polarity is causing stagnation.

I'm sorry if you feel you are a victim. That is a terrible way to live. Personally I couldn't do it. I admit my character defect is that I have to feel as though I'm a continuing work in progress, learning, exploring, changing and accepting as I go along.

Nancy Brown said...

I had been following this blog along with a few others. I had not been following everyday. I heard about this blog on Twitter where there was another mother that twittered about this family needing our prayers etc.

While I don't particularly care that these people got donations I often wonder how one persons blog gets all of the attention and another persons doesn't.( Again not saying that my blog should have gotten it over this person either) But the time from finding out she was brain dead and her death was awhile. And in the meantime she was suffering from hydrocephalus. That is a painful condition that is life threatening in itself. Yet no operation was done because this child was allready gone.

Anonymous at 4:42 pm
Not everyone that has a premature child did anything risky. I did not have IVF, I didn't smoke, drink or do any drugs. In fact I had no caffeine the entire time I was pregnant. There was no multiples involved. I maintained a healthy weight and weight gain. Yet I still delivered a 25 weeker. Sometimes the "problematic cost to society" was not caused by something someone did.

I do not think that the premature birth of my child ruined my life. It did wreck havoc on the financial security that we had. We can't buy a home. We can't get a loan for a car. We can not have any luxuries that require credit. Yet we make plenty of money to pay our day to day expenses, extras and pay for all of the above mentioned things.

Prematurity changed my life. I didn't have the luxury of bringing my child home from the hospital in all its gory. I didn't get to feel my child kick, move or grow bigger than a pound. Those are things that no matter who donated to me or my family I could not redo.

I didn't get to experience the joys of the first crawl at the right age. Instead I worried tiem and time again that it would never happen. Why did I worry because it didn't happen till he was almost 2. The ideas that we are upset that that family got money is stupid. It isn't the money. But if their child was not going to make it then the donations that came in should have gone to help those who were still in need. Not to have her nails done etc. Like gas cards to the NICU for the parents. Care packages. Give back to those who are helping you.

I sometimes visit a blog that also asks for donations all the time. This mother has stated that it is because they no longer have a education fund for their 5 children they need the donations. They have a home, on medicaid, on private insurance. Have not declared bankruptcy. Have not lost their house. Yet time and time again she is "winning" laptops, then offered a job from the people who were giving away the laptop, furniture, toys, money. Why is she entitled to that when most of us can't even own a home.

Again yes maybe it is jealousy, maybe it isn't. But really if there is a broken system lets fix it.

I am not ashamed that I kept my child alive. I have an amazing kid that I feel is a miracle. But to the outside world they see a disabled child.

I hate hearing as a child of a 25 weeker.. he is fine now though right. Well yeah if fine is cerebral palsy, hydrocephalus, low vision and medical procedures more often than you can count

Financial costs are the least of the worry when in the NICU. Surviving is. Not making braclets, scrapbooks and going on tv... SURVIVAL

Anonymous said...

I understand where you are coming from TPD. I am very tired of the same argument over and over and the constant message that prematurity has destroyed our lives. We are somehow helpless against the injustices done to us by doctors and the poisoned medicines they forced upon us. I am not saying have a micro preemie is a walk in the park or that your life isn’t changed by the experience or the outcome. But I think some people get stuck in victimhood. They forget that these doctors and poisoned medicines helped to save their baby’s life. And what amazes me more is that the experience of having a premature infant was so horrible that they go and procreate more and have more preemies. And who do these victims turn to for help, more doctors. And they so easily swallow any pill or elixir that is prescribed to them that they don’t even question any new drug or treatment on the market.

But the irony is that you don’t have to be a victim. It’s a choice.

Anonymous said...

TPD.

Helen, I don't see why you would have any of my personal information, or what it has to do with anything, other than just bullying and intimidation and an attempt to silence any dissenting viewpoints.

If you know everything about me, why did you say yesterday that you suspected my posts of being written by a "committee"? (general conspiracy/paranoia?)

Nevertheless, I have already stated (several times!) on this blog that I am a female attorney, a mother of two kids who were both premature, I think that along with my handle is sufficient, what else would you be wanting?

Kate K. said...

I haven't read the Freedman's blog in full (only a 2 minute scan). Given what Anon (May 15, 2009 1:41 PM) said about the hospital coverage, can one assume that they gave up their jobs or took unpaid leave while she was in the hospital causing a cycle of bills?

I was on a preemie list where this family was mentioned. My impression that a lot of the uproar had to do with a concern over exploiting the situation for a profit and media coverage. It struck people as wrong. The other thing that lent a suggestion that something was amiss was that the mother had started a blog entitled "Journey to a Hot Body" while her child was in the NICU.

I did somehow come across their blog about their daughter several weeks ago before the controversy was brewing. I just glanced at it then too. A very cursory glance. I'm not sure how I came across it.

I can't imagine for what reason a child would be kept on life support if "brain dead," but I haven't walked down that road (thank goodness). It is interesting that the family has said on their blog that they wanted to give attention to their daughter's situation to help other families given that they seemed unwilling to learn about or contact families who had been down similar roads. But again, having not read it in full, maybe I'm missing something. I guess that I can't comment on that too much either.

I guess I'll hold off from saying anything else until I'm more informed about this circumstance. Or maybe I won't. This topic presents such a bed of thorns if it focuses on the particular family.

Perhaps a redirection back to the costs of prematurity? My impression was that the causes of prematurity can be explained by known factors about half the time. The other half can't be explained. When we talk about limiting the costs of prematurity, does it make sense to focus on anything but the known causes? Are their laws that hold mothers accountable if they drink excessively and do drugs while pregnant? If so, what's the description of those laws? Should laws be created limiting the number of embryos implanted? Is there a precedent for such laws?

I guess I'm just brainstorming here.
==KK

Anonymous said...

Helen Harrison to "TPD":

I'll let you be the one to tell us who you are, by name, if and when you are ready.

I don't think you (the singular and plural you) have fooled any long-time readers of this blog. Your prose style (among other things) gives you away.

Helen

Anonymous said...

Helen Harrison to KK:

Yes, there are laws in other countries -- like the UK-- that limit the numbers of embryos that can be implanted. The laws are bringing down prematurity rates, I have been told, but I don't have any evidence on this that I can cite at the moment.

The half of premature births that have no known cause are being increasingly linked to prenatal infection and inflammation, which can be found when placentas are carefully examined after preterm birth, but are often not obvious on delivery or on cursory examination.

The earlier the preterm birth the more likely it is to have inflammatory or infectious causes, and these, in turn, greatly increase the likelihood of poor short- and long-term outcomes.

The issue of IVH is increasingly and critically being examined in the US. I would expect laws on it soon.

Another way to decrease preterm births is by making sure all mothers-to-be have good supplies of folic acid. I hope upping the dosage for supplementation of this important nutrient is made a priority soon.

Helen

Anonymous said...

TPD.

Helen, I can assure you that I am one person. Way back I would sometimes forget to put "TPD" before my posts. Sometimes people would confuse my posts with other anonymous posts, so maybe that is why you think I sometimes have a different style and thus more than one person posting...or perhaps someone else has used TPD to post.

I am registered as a republican because I had to register with a party to vote in a primary, and I think it usually matters more (from my viewpoint) who the republican candidates are, should they win (eg issues like evolution and science, it is important to me to keep religion out of science class). I vote democrat just as often as republican, however.

I am also a former engineer.

So that's about it, I think that is more information than just about anyone else here has shared.

Anonymous said...

My child’s premature birth has affected me in so many ways but there is a positive aspect. I now have a greater appreciation for life and for living in the present moment. I became conscious of just how fleeting life is and value the time I have with my family.

As far as the financial aspect, it hurt my insurance carrier more than us. Yes, we went from two incomes to one but that turned out to be for the best. It gave me more time with my son.

When others solicit for donations, whatever their cause or dilemma, I give without expectations. I need no thank you note or list of what the money was spent on. I give from the heart. It is on their conscious if they do wrong with the money.

We have to remember the media is an industry that will sell us whatever we want to hear. Until WE demand better, it will continue to sell us good feeling stories, or tantalize us with the latest gossip or find ways to scare us with the latest fear based half truths. The mundane is boring and is not chronicled.
-Tammy

Anonymous said...

Helen Harrison to TPD:

Yes, the political information is consistent with what some of us already know about you.

And no, this is not about when you forgot to sign on as TPD. There are give-aways in your "TPD signed" posts.

Whenever you are ready to tell us more -- like your real name (not one of your aliases)...I urge you to do so. You gain no credibility by trying to remain anonymous.

Helen

Anonymous said...

Okay, this is none of my business but I'm just damn right curious. This issue between *TPD* and *Helen*, what's the deal? And I don't understand how *TPD* signing under the name *David* would matter in the scheme of things. How could it? Yes, anyone of us could be tracked down to exact location. You got to love technology but the idea that *Helen* knows who *TPD* is and that their is some conspiracy is totally outrageous. Now saying that, *Helen* give us the scoop. Who is this *TPD* person and what are they trying to convince me of? I love good conspiracy theories. I agree with *Tammy* about being tantalized by the latest gossip. Oh, wait, that's because I am *Tammy*. I guess I'm plural. My husband does say my foundation has a crack in it.
-Tammy

Anonymous said...

On a side reference to my funny above, it is sad that we have to polarize each other when our opinions differ. It is the same going on in politics and the real world. We can’t agree to disagree. We have to tear into the other person. We don’t have empathy for each other anymore. We rarely put ourselves in other’s shoes. I could give countless examples but are they really needed?

With that, I want to thank everyone for sharing their comments and send a thank you to Stacey for keeping this blog up and running. Your voice is needed and appreciated. Same goes for TPD and Helen. Keep on sharing your thoughts.
-Tammy

Anonymous said...

Helen Harrison to Tammy/"Tammy":

This is a about a long-standing harrassment tactic in which "TPD" enters the fray whenever the conversation turns to follow-up studies, micropreemies,issues of who pays and who profits from NICU care (a particular sore point for TPD)to insist the glass is half full, or whatever, and hurl insults at anyone who dares give evidence to the contrary.

If I read TPD correctly, Stacy, was just insulted for expressing -- or at least passing along -- "ugly" thoughts about how prematurity, and its costs, ruins the lives (financial and otherwise) of many families.

This matters because "TPD" is a hoax, and many of us here have long known it. And no, TPD is not named "Dave."

And yes, this "TPD" and various acolytes are part of a concerted effort-- a "conspiracy," if you will.

I do not share your contention that letting others in on the hoax is somehow "outrageous."

Helen

Anonymous said...

A concerted effort to look only on the glass is half full aspect of the repercussions of prematurity. Okay, I will go with that but now I want to know why *TPD* does this? I would presume that it would have to be either for financial gain or some crazy right wing evangelicalist agenda. I am thinking it must be the latter because doctors and pharmaceutical companies are the financial winners of prematurity. I don’t think they are perusing blogs and paying someone to counterview. I mean it’s not totally out of the question but think it would be more unlikely than for a crazy right wing evangelicalist to have a lot of free time to comment on this stuff. Do you know why *TPD* does this and can you share with me? I have been following this blog for sometime and always thought it was just a parent of a preemie that either had a very young child or really good outcome.
-Tammy

Anonymous said...

Helen Harrison to Tammy:

TPD is not a right wing evangelist... but you're on the right track with some of your other guesses.

Meanwhile, I'd really like to return to the Freeman story. I had not known about them until this blog post.

Helen

23wktwinsmommy said...

Someone made a good point earlier about SSI providing Medicare if a baby is born below a certain weight. I was completely insured by health insurance through my employer and still received Medicare, leaving us without any NICU bills. In our state, Massachusetts, you can get a secondary insurance on a sliding scale if your child has a disability or chronic health condition.
Even without secondary Medicare, my family is covered under my "regular" health insurance. Our copay is $25, which could add up I guess, but I just don't understand why I am not suffering from this financial hardship like so many others? Is it because of my state?
Like I said, we certainly saved on copays with the protection of Medicare, but there would have been no other outside expenses without it...regular insurance covers doctor's visits, medication, some equiment, early intervention, etc with small copays. Even our homecare nursing was 100% covered, which actually SAVED us money because we didn't have to pay for child care.
I am outraged for families who are in financial hardship! Either my health insurance is great (Blue Cross/ Blue Shield), or Massachusetts is the place to be. It is mandatory to have health insurance in Mass...I guess you pay a hefty fine at tax time without it. I can see how it is beneficial to mandate that everyone is insured.

23wktwinsmommy said...

I forgot to mention we were eligible for Medicare without the requirement of income elibility based on a program that enabled us to have this based on the twin's oxygen need. (Program covers children who require "life supporting" equipment or support..it came out of the desire to have medically compromised children care for at home as opposed to residential medical facilities.) That's when we didn't have the copays and nursing was covered, which is when it came in handy because they were numerous doctor's visits.

terri w/2 said...

I saw the Freeman's on "The Doctors", and, truly, after seeing pics of their little girl, with very obvious hydrocephalus, trach, etc., it was heart-wrenching.

The parents were/are apparently both realtors, and had a decent income of around 200,000 per year. . that is until the recession hit. They said that their income so far this year was around $3,000. They are losing their house, moving in with his parents. They have two other children.

I haven't visited their website, but in light of all they are going through, I wouldn't be bothered by the fact that if I had donated, that I had not received a thank you note. When my girls were in the NICU, we were flooded with gifts, and I do not remember sending thank you notes. It was such an horrific time in our lives, that some of these niceties just went by the wayside. I would like to think that these parents really were at their wits' end trying to pull their family out of a number of catastrophies. It probably didn't help that their story hit shortly after the octomom mess.

And to comment on the poster who said that there is a higher incidence of PPD among neonatal moms. .really, did there have to be a study for this? Your baby is on the brink of death, and possibly suffering, you are in an environment that is completely foreign, you have completely lost control of everything related to your newborn, and there has to be a study that there is a higher incidence of PPD? I wonder how any mom gets through the NICU without a dx of PPD or PTSD.

Anonymous said...

Helen Harrison to Terri w/2:

I have to admit that I don't know where I come down on all of this.

I can't fault any family that does what they can to keep a roof over their (and their childrens') heads, even if it may sometimes involve shameless media exploitation and solicitation. On the other hand, if they kept their daughter alive only for the production values and the money...well that's something else again. That might be called child abuse.

I've just visited their website, and I didn't know whether to gag or weep.

I know so many other preemie families who end up in bankruptcy, having to divorce to shelter assets so at least one half of the family is not left totally destitute. And I really don't want to cast stones.

To the NICU nurse who asked in the previous thread about what to tell parents: tell them up front what the immediate and life-long costs for their family are likely to be. Insurance, if you have it, helps for a while...but then it runs out as do the programs that provide support in the beginning.

Also it has been my experience, personally and with other families, that the financial costs usually reflect the degree of medical pain and suffering of the child and family. The financial costs and the human costs are closely aligned.

Helen

Anonymous said...

TPD.


Who the heck is David/Dave?

Tammy said "You got to love technology but the idea that *Helen* knows who *TPD* is and that their is some conspiracy is totally outrageous"

Yes, it is really nutty.

I have shared the "why" of my opposition to much of what Helen stands for - here is the jist of it:

when my son was born and struggling in the hospital, the first site I came across in my search for information was Helen's website (I have been corrected before, maybe it wasn't hers, or it wasn't a website, but there was some connection, it had a "premature baby, premature child" tag and included articles and a discussion forum).

After reading through much of the material there, it first struck me how utterly and unrelentingly negative the material was. Now, in life nothing is that polarized -- black/white, postive/negative -- when someone paints complex issues that way it automatically gets me wondering what the underlying bias or agenda is. Questioning along those lines was met with swift rebuke.

Second, a parent of a premature child going to great lengths to paint premature babies and their parents as victims - out and out stating that the child should not have lived - it sits wrong with me. Not because I sit in judgment of a parent's *feelings*, but because of the *practical impact* those sentiments, expressed in writing and verbally for the child to read and hear, may have on that innocent child. It is irreparable, it is in my opinion a complete abrogation of parental responsibility not to consider *that* impact (right along with those almighty financial inconveniences.)

Then there is the discrimination in general that I worry about - but over time I come to see that the discrimination - in the form of abortion counseling - *is* the endgame.

That is the "why" of it. Even as I acknowledge the right of parents to make their own choices, the fact that someone would seek to influence these choices not out of compassion, but out of some longstanding personal feeling of victimization is very disturbing to me, and I feel that I must oppose such influence when I see it.


Others are free to disagree, and I can respect that, but I can't "agree to disagree" with Helen, because she is not merely opining, she is holding herself out as being in possession of the "truth." That calls for more direct opposition.

So on to my "identity" - I am fine with giving Stacy my email address so she can verify that all of my posts come from the same IP address (tho she should be able to do this anyway) if *she* is concerned about a "hoax." I can promise everyone here that there is no such hoax, that I am one person and I am not part of, or representing, any group or organization, now or in the past.

Helen your rantings about a conspiracy are either intentionally outrageous trying to provoke me to reveal personal information to prove you wrong (and as you say you already know who I am, so you don't need me to tell you), or more likely you really believe it (in which case I would be nervous for my safety, because that is very paranoid).

Anonymous said...

Helen must believe in the same "conspiracy theories" that Hillary Clinton did.

Anonymous said...

Helen Harrison to TPD who asked:

"Who the heck is David/Dave?"

You'll have to ask Tammy, she brought it up.

"Helen's website"

I do not now have, and never have had, a website.

You write about:
"...a parent of a premature child going to great lengths to paint premature babies and their parents as victims - out and out stating that the child should not have lived - it sits wrong with me"

I have given an honest accounting of NICU and follow-up data.
I'm sorry that the facts sit "wrong" with you, but they obviously do, as you play very fast and loose with them.

I have never stated that preemies should not live (except in rare cases in which all other parties to the decision agreed) nor do I counsel abortion.

I do support parents (where death or severe disability of their infant is the most likely outcome) having an informed choice about comfort care instead of no-holds-barred resuscitation and futile, or near futile, treatment. This is mainstream ethical thinking. If you have a problem with it, you may want to consult the American Academy of Pediatrics which holds the same views I do.

You seem to be projecting with all this "victimization" talk, since you clearly feel victimized yourself by my citing of data that makes you uncomfortable. I suggest that this is your problem, not mine.

You worry about claims to "truth." I do too.

So please, if you have sound evidence that contradicts the Vermont-Oxford Network or the NICHD, or EPICure data which I have been quoting here, please let us know what it is.

As for your offer to give Stacy your IP, please do -- and anyone else who is signing on as TPD should do likewise.

Helen

Anonymous said...

Helen Harrison to Anon 10:20:

As it turns out, Hillary was right -- ever heard of a guy named Richard Mellon Scaife? I know a few of his friends. Some are still proud of what they did while others have switched parties in disgust and written apologetic memoirs. Check it out.

Helen

Anonymous said...

Oooh Helen, you sound so nutty!

I've been reading the preemie internet for a long time- ever since I started having problems culminating in my 25weeker's birth.

I too found your writing ALL over the internet and at that time genuinely believed you spoke the "truth". Your agenda is pernicious and you're being called out by TPD. Thus, the weird threats and accusations against her. Consortiums and group posting? Ridiculous!

I've noticed you always do that. Attack attack attack and then state "let's move on back to ---" when whomever it is doesn't back down.

Come on, cut it out.

23wktwinsmommy said...

Since this was brought up in a conversation that I was involved in outside of this blog, what is considered severely disabled? What do studies use to determine the extent to which a child is considered siabled, severely disabled, etc?

Anonymous said...

Helen,

What was the impetus to write your article, "Many prematurity outcomes are mild"? Was that just to throw us "1/2 glass fullers" a bone? Granted, your article was brief but it does have a positive spin on it, so unlike most of your dreary skewing of data.

Anonymous said...

Why has this turned into a bash Helen thread? When I first came here, I was honestly shocked by some of the things she had to say, but I was at the beginning of my journey and not ready to hear those things yet. The things Helen says may be hard to hear, but they need to be out there because they are reality. My son was a 24 weeker. He has hydro, CP, is tube fed...the list goes on. But, you know what, he is the most amazing wonderful child and is truly the joy of my life. However, parents need to go into this being informed. It's not an easy road we travel, even when you leave the NICU or hit 2 years old. Being a preemie parent takes its toll financially, phyiscally, mentally, emotionally. There is a whole community of folks out here who are parents of former preemies who do not make it out of the NICU unscathed. I don't think that makes us victims. If you spend some time looking at the blogs that are out there, most of these moms and dads aren't looking for pity, etc. I wholeheartedly believe that micropreemies who don't leave the NICU with some long lasting effects are in a small minority.

Anonymous said...

Yes, statistically speaking, those born under 26 weeks gestation frequently suffer serious long term effects but not *all* preemies do. The odds for a "normal" life are typically much better for those born over 27 weeks.

Anonymous said...

To Anon 9:40,
I sometimes think it's based on the parent's perspective of the problems their child faces once they leaves the NICU. Prematurity impacts so many different facets of the body that the problems each preemie face are unique to them. Then the problem can range from mild to severe. Some parents get so consumed with worry and waiting for the next shoe to drop that they read every study they can get their hands on and address every complaint their child mentions. I understand this proactive attempt because the NICU experience has left them in fight or flight mode. I myself battle with this type of anxiety. However, they do have parents that accept what has happened and move on to the idea that the rough times are behind them and it will just get better despite whatever the current problems they are facing. They are relaxed and don't stress about the future. That would be my husband's perspective. Now these opposite perspectives aren't just unique to preemie parents, this is normal for how everyone handles problems. It's the half glass full versus half glass empty. Studies have shown half glass full perspectives are healthier and lead to more successful outcomes and overall happiness. Recently, my son was having problems in Math. He said Math was his enemy and just wasn't good at it. I said, "That's odd, you've always done so well at it. You're actually really good at Math, maybe it was the tests. He started to believe he was good at Math and like that his grades got better. No extra studying just a perspective change. His best friend is still struggling with Math and claiming Math is his archenemy. Perspectives matter.
-Tammy

Anonymous said...

Helen Harrison writes to 23wtm:

In the NICHD data I've been quoting, disability at age 18 - 22 months refers to retardation (DQ below 70)and/or moderate to severe CP -- this usually translates into not being able to walk.

Other studies define disability at this age somewhat differently.The Vermont-Oxford Network, for example, considers total blindness and profound hearing loss as well as non-ambulatory CP and <70 DQ.

Helen

Anonymous said...

Tammy,

You're correct perspectives do matter. You have to deal with your son having trouble with math. I have to worry about if my son will ever walk independently, will he be able to care for himself as an adult, and what is going to happen to him when I am gone from this Earth?

It gives you a different perspective when you have to watch your child still endure painful medical procedures, to scream from the moment you enter the doctors office to the moment you leave because he is terrified even if you are only there for a weight check, to try to balance therapy between letting your child just be a kid, to watch their frustration when their body won't let them do the things they want to do and when their mind won't let them tell you what they want or need.

I do look at the glass as half full for my son. He suffered bilateral grade IV IVH. His MRI is nasty. We were told he would never be able to do much of anything. I refused to believe this. My son is doing great from my point of view. He can crawl, sit, pull to stand, cruise, and is learning a few words. I think because I saw the glass half full for him and refused to pigeon-hole him as a child with no potential as many doctors tried to do. It's taken alot of work for both of us and alot of prayer. I celebrate the smallest accomplishment and praise God for all he has given us.

Yes, there is a component of flight or fight to the way I see things...because I still have to fight for my son and will continue to do so for the rest of my life. The special needs world and the preemie world overlap.

Parents need to go into this informed. It is a long, hard road. It is very rewarding, but will change your life forever.

Anonymous said...

Helen Harrison to Anon 8:11:

This is not an article, just something that was exercerpted from a series of my posts and put up on a website (not my website -- I do not have one).

What it leaves out is my noting of the very high incidence of moderate to severe disability and, I believe, my acknowledgement that a combination of so-called "mild" disabilities could also leave a child unable to live independently as an adult (for example an IQ of, say, 86, along with autism and "mild" CP -- all considered "mild" -- or not considered at all -- in follow-up, could leave a child unable to function on his/her own).

To complete the picture I mentioned children who had grown to adolescence or adulthood without apparent disability despite rocky beginnings, or whose "mild" disabilities were not an impediment to independent living. Unfortunately, they comprise a minority of micropreemies, although probably a 60%+ majority of the 26-32 weekers.

Here's the excerpt from that post that, I might add, constitutes a "skewing" to the optimistic side by the blog author who has not included the other material. The title is also not mine.
***
Many Prematurity Outcomes are Mild

By Helen Harrison

Although studies indicate that the majority of preemies have ongoing problems, it is important to remember that often these problems are considered to be "mild" -- learning or behavior problems, for example, or vision problems correctable with glasses, and/or motor problems that may make them less than perfect athletes. These problems may not always seem mild to a parent or child struggling with them, but they do not necessarily rule out a successful, happy and independent life.

There are also children who emerge from this experience (even with some pretty bad risk factors) to be completely normal, and not only normal, but superkids, by anyone's definition. In The Premature Baby Book, there is a story of Steven and Timothy Laurie, identical male twins, about 1000 grams each and 26 or 27 weeks gestation (all big risk factors). These boys had very rocky neonatal courses. One of them had a near-miss SIDS after coming home. Yet today both boys are excellent students and getting ready to go off to good colleges. They are handsome, athletic, musically talented, Eagle Scouts, etc.

Their NICU pictures were so gruesome that the editor at St. Martin's Press didn't want me to use them, but you should see those guys now and I have this year's Christmas card to prove it!

Also in the book is the story of Rosie, who, when we went to press back in 1983, was not doing so well. She had mild CP, vision problems, and was in numerous therapies. Her mother was feeling pretty discouraged. Today Rosie is in college and studying to be a special ed teacher. She is six feet tall and an excellent basketball player. She was making straight A's, last I heard.

There are many examples of teen or adult preemies who have escaped problems or done well in spite of problems who are right here on this list, on the preemie-child list and on the retinopathy list. Some of the preemie-l parents were preemies themselves.

Helen

Anonymous said...

Helen Harrison adds:

That word should be "excerpted." Someday I'll learn not to type and talk on the phone at the same time.

23wktwinsmommy said...

Helen,

It's probably virtually impossible to set "perfect" parameters, but that definition of "disabled" leaves a lot to be desired. Non-abulatory CP at 22 months does not mean the inability to walk in the future. And it doesn't appear to differentiate between kiddos who are walking with an assitive device and those will never be able to walk. Does it?
My son would be considered to have "moderate CP" as he is not walking without holding on to someone or something or without his walker, but he can sit up, can sit up and wash himself in the tub (with help and supervision obviously, he's 2 1/2), feed himself with utentils, brush his teeth, stand well enough for me to dress him easily, etc. This is a very different experience from another child who has "moderate to severe CP" who can't do one or more of these things.
Also, a high score on DQ does not translate that the child won't have a severe LD once they hit school. It also doesn't give a clear picture of language. Some don't speak much at this age and never do, other children's language development takes off at 24-36 months or later.
I'd argue the parameters cause the numbers to be scewed in false "positive" results as well as false "negative" results.
I suppose this is why it's important to do follow up studies MUCH past age 3. At age 3 (we go back to NICU follow-up this summer) my daughter will probably test extremely high, minus lower results with some gross taks(balance). Her Pre-K language assessment done recently through EI was very high. But what does this mean when she goes to school? Our city's Special Ed Dept "gets it" and is putting her in an inclusion class for Pre-K and is keeping her on an IEP (and other kids "like her") until AFTER kindergarten, so for 3 school years, because he knows that once tasks like reading, etc take place the issues with learning can appear, and it's easier to keep a child on an IEP than to take them off and then need to put them back on later.
My son on paper will look "severely disabled" as a non-walking, limited verbal child. But he has good non verbal communication and tests well with cognitive tasks. I don't see him as severely disabled for reasons mentioned above, but if he doesn't improve gross motor wise it will impact his life as he gets older, whereas now it's not a huge burden that he's not walking unassisted.
I will ask yet again if our NICU follow-up team will consider tracking micropreemies longer. We'd be more than willing to participate. And it's be important to get a more accurate picture of outcomes.

Anonymous said...

Anonymous said:

And what amazes me more is that the experience of having a premature infant was so horrible that they go and procreate more and have more preemies. And who do these victims turn to for help, more doctors.

Hi Anonymous,

Do you have any research to support your statement above? It's actually stated in an offensive and insulting way. Perhaps you did not realize that.

After my first child, born unexpectedly premature, I felt, for a long time, that I couldn't have another child because I could not, would not, walk back into that system. I could not, would not, trust that system.

So the time came for me to make a decision about having a child. I interviewed many doctors and I interviewed midwives and nurse midwives.

I grew up with a strong prejudice against midwives - it was just culturally ingrained. I learned that it would be very dangerous to have a child with a midwife and only a doctor could do it right.

My experience in interviews with midwives was that they were were leaps and bounds and heads above the doctors in their ability to communicate their knowledge, their intelligence, their approach and at the same time teaching me constantly.

I took a step and went with a nurse midwife. Wow, I was treated like a human being not a cog on an assembly line. THe attention and care and monitoring I got was exceptional in comparison to my prior experience with an ob-gyn.

One ob-gyn told me that they just can't afford to spend that kind of time with their patients due to insurance reimbursement.

I had many conversations with many midwives in my search. Interesting, intelligent fascinating conversations.

And when I told them the story of what happened with the birth of my first child, I remember one nurse midwife saying "I hear these stories over and over and over again. Yet the women go back to the doctor, back into the system."

I think the reason woman go back is the same reason I would have gone back if I hadn't learned to trust my brain and my gut (learned the long, hard way).

We are so culturally trained and ingrained to trust the doctor and not to trust anyone else.

In addition, the docs are in the majority and have a huge share of the market. Often, it may be the woman's only choice.

Joan

Anonymous said...

Helen Harrison to Joan:

There are studies that show families who have preemies are actually less likely to try for a subsequent child.

We struggled with the issue because our preemie son and first born (now age 33) requires major care, but, after much medical consultation, we decided to throw the dice one more time, not with a midwife, but with a group of docs who knew where we'd been and respected our views.

I made plans to deliver at a hospital where our wishes would be honored. I had amniocentesis -- although I was *only* 34 at the time.

We were rewarded with a beautiful full-term daughter, Amy, who is probably reading this post now -- she is a major follower of Stacy's blog. (Hi, Amy, please call me about dinner tomorrow! Love, Mom)

Amy is devoted to her older brother, and she and her husband Elliot will take good care of Ed when we no longer can.

For many women in the past, a preemie or a miscarriage was simply a part of normal reproduction (my mother lost 4 babies, had 4 full-term surviving children). In the olden days, pregnancy loss was considered a "given," if a tragic, part of life, and people moved on, tried again and often had healthy fullterm newborns afterwards.

What has happened, thanks to modern medicine, is that many babies who would previously have been born very prematurely and quickly died are now surviving, often disabled. This takes a toll on future reproduction in many families.

My husband and I once hoped to have at least four children (we both come from big families), but after Ed, we scaled back to what was reasonable given our circumstances.

Dr. William Silverman, the "father" of neonatology, used to talk about the "rights of the pre-conceived" -- referring to the reproductive opportunity costs of preemie parenthood.

Helen

Anonymous said...

Helen Harrison to 23wtm and anon 8:11 AM:

Here are definitions of disability from the EPICure study, and the breakdown of outcomes *at six years of age* among this national cohort of <26 weekers.

(Marlow et al. Neurological and Developmental Disability at Six Years of Age after Extremly Preterm Birth. New England Journal of Medicine 2005;352:9-19):

Severe cerebral palsy (nonambulatory): preemies 6%; term-born controls 0%

IQ between 39-69:
preemies 21% ;
term-born controls 0%

Profound sensorineural hearing loss:
preemies 7%;
term-born controls 0%

Blind:
preemies 6%;
term-born controls 0%

Any severe disability:
preemies 22%,
term-born controls 0%
***
Moderate Disability:

Moderate CP (abnormal neurological findings with functional loss but ambulatory):
preemies 7%,
term-born controls 0%

IQ range 70-81:
20% preemies;
1% term born controls

Any moderate disability:
24% preemies;
1% term-born controls
***

Mild Disability:

Neurological signs, minimal functional impairment:
26% preemies;
0% term-born controls

IQ range 82-94:
31% preemies;
14% term-born controls

Mild hearing impairment:
4% preemies;
1% term-born controls

Strabismus or refractive error:
29% preemies;
4% term-born controls

Any mild disability:
34% preemies;
18% term-born controls
***
No disability:
20% preemies;
75% term-born controls


I'll get back with more info on psychiatric and lung outcomes.

And for 2 year outcomes of the NICHD -- please visit www.nichd.nih.gov/neonatalestimates
where you can get the outcomes relevant to your micropreemie with out any "dreary skewing of the data."

Helen

Anonymous said...

TPD,
Havent been to the commments section in many, many months, and am happy to see that HH is still beng challenged. So TPD thank you for calling her out. All she has is statistics to back her arguments. Helen doesnt have feeling and can only memorize what she reads and quote study after study. It makes me sick that she is still out here blathering on and on. Please Helen, give us all a break and stop trying so hard to sound credible. The conspiracy comment just makes me laugh.

Christine

Anonymous said...

Christine said to PTD and hence the rest of us:

Havent been to the commments section in many, many months, and am happy to see that HH is still beng challenged. So TPD thank you for calling her out. All she has is statistics to back her arguments. Helen doesnt have feeling and can only memorize what she reads and quote study after study.

Christine,

How dare you say Helen doesn't have feeling? It is out of suffering and compassion and witnessing the suffering of her family, her child and the suffering of other families and children that she researches and shares this knowledge with others.

And she gives facts, irrefutable facts,evidence based research, of which there is reams. And there is reams of research. Question: WHY don't we hear about it anywhere else?

So therefore, when you say HH is being challenged, are you saying that all the medical and scientific research that she provides us access to is being challenged? Again, a familiar theme here, is shooting the messenger.

In addition, she shares this info despite the sometimes very strong reactions of hatred, ignorance and anger. It comes off as sniveling hatred. It comes off as low. And ignorant. And cowardly.

Joan

Anonymous said...

TPD.

Helen, I would like to ask for clarification about a few things, because your responses in these areas are (have been) vague.

(1) What is your relationship to the website prematurity.org? I know you said it is "not yours." OK, fine. What is your relationship to it exactly? (I did a search to find the tag "premature baby premature child," and this is the website I was referring to.) Strangely, there is nothing there to indicate who is responsible for selecting or posting the content, yet your opinions, articles, book, etc. are prominently featured.

(2) When you said the other day that

"Telling new parents the truth about prematurity and outcomes will always make "the messenger" into a villain -- at least in the short run. No one wants to hear bad news, especially when there are no options."

then followed up with

"That is why I think OB-GYNs should be giving parents the information when they have a chance to act on it."

and

"I have been in correspondence with several neonatologists who tell me that it is precisely *because* micropreemies (by which we mean <26 weeks) have outcomes as poor as infants born with genetic anomalies options should be offered to these parents."

(a) What did you mean? What actions do you think parents might take, and

(b) what is the timeframe associated with "when they have a chance to act on it."

Threatened early birth before a certain gestational age (I am not sure of the age - 22 weeks?) wouldn't require any parental action, because medicine can't do anything to sustain life until a certain point. So you must be referring to a timeframe after that point - what exactly it it?

If you choose to be vague in answering these direct questions, I will assume that you are concerned that the answers will expose something you do not wish others to see.

Anonymous said...

TPD.

Here is something that may make me sound as nutty as HH, and while I can reassure you that I am not, I have definitely been stunned (not quite into silence, I guess):

Before my post explaining "why" I engage in what many feel is "Helen bashing", I checked to see if the website with the tag I remembered was still up. It was, and the content was very similar to what I recalled it to be (7 years ago, I admit, but definitely very similar).

As I was typing my last post, it occurred to me that I would like to have an idea of the rough percentage of "Helen-based" information on that site, since I was opening the door to a response along those lines.

At first I thought I typed the wrong address (no). Then I did a search on the tag to get to the website, the same way I had a couple of days ago, to see if a different site came up (no, same site).

The same website has been updated extensively. Not that the content is "new" - the articles and information there is old as creekwater - just an entirely diffrerent presentation/mix of things.

Honestly, I have no way to document this. It sounds completely insane. Yet my memory from merely 48 hours ago is not *that* bad (and I do analyze large volumes of information for a living, so I am fairly good at digesting content), and I do think it's true.

I don't think I have anything much to say, but I do feel that my instincts were/are right about the "pernicious" agenda (thank you anonymous for that term, it is spot on).

Anonymous said...

I wanted to address TPD's comment about getting information when it is possible to do something about it. My friend had a 23 weeker, who has had a pretty great outcome so far (she is nonverbal at 3.5, but has no physical or emotional issues yet and cognition seems OK).

His wife was in the hospital on bedrest for a failing circlage, starting 2 months before his daughter was born. She was also in preterm labor,so there was no chance the fetus would make it to term. They were praying to reach 28 weeks.

At 22 weeks gestational age, his neonatologist told him that in their state, after 24 weeks there are no choices for the parent--if the fetus is born alive, the hospital will do full resuscitation until brain death occurs, regardless of the wishes of the parents or how hopeless the cause. The doc told him this, because they could have chosen to stop tocolytics and allow labor to occur before 24 weeks if they didn't want to do full resuscitation on a micropreemie.

However, while the doc allowed a choice when one was possible, he also didn't REALLY explain what life was likely to be like for the family of a 24 or 25 weeker. I don't know if they would have made a different choice, given some of the information Helen and others have provided on this site. It certainly would have made the first 2-3 years of their lives with DD easier, since they were really stressed out about meeting milestones and catching up.

They ended up with a great outcome, but up until she was 2, they really expected her to "catch up" to a term baby. They were considering adopting another baby, but now that it is obvious their DD will need extensive (and expensive) therapy for much of her childhood, and may not live an independent life ever, they have abandoned plans to have another child.

I am all for allowing parents to decide for themselves on their childrens' care, and I think it is barbaric that they have no choices after 24 weeks in that state. I have a family friend who left neonatology for this very reason--he thought it was awful to put such underdeveloped babies through so many painful procedures with so many bad outcomes, especially over the objections of the parents. Sometimes the most loving thing to do is to let someone go, an I really think everyone should be able to decide that for themselves.

I will go out on a limb and say something controversial--when I was pregnant, we decided our personal line was 28 weeks. I know others might disagree, and I am glad that they can choose to go a different way for their families. We talked about it after seeing what happened to my friend, and then did our own research on outcomes.

I never would have even thought to consider such a thing if I hadn't known someone who went through it all. We were fortunate to be able to discuss this as a family beofre we were living it. Thankfully, we never needed to implement this decision. I think this is what Helen wants to enable others to do. My sister and I talked about it when she was expecting, and she decided that they wanted full resuscitation no matter what. We both still love and respect each other, we just know we are very different people in different living situations.

Anonymous said...

I think it is TPD who wrote:

If you choose to be vague in answering these direct questions, I will assume that you are concerned that the answers will expose something you do not wish others to see.

TPD: Answer these questions: Why are you using TPE to question Helen? Why are you using an off topic subject matter to push your not quite stated agenda?

Why not write to Helen on your own, off this list and have the discussion you need to have?

Why are you hijacking this blog? Is there something about you that you may not want others to see?

What do you think? What is your point of view? Can you state it for us? Can you write it out so that we can study it, look for inconsistencies, or even a hidden agenda that might reveal something about you?

Joan

Anonymous said...

Oh for God's sake. She is not hijacking this blog. If you want to see a hijacking of a blog, look up neonatal doc, which Helen hijacked to the extent that it was shut down (after she inquired about how to report him in secret after she was thoroughly refuted- its all there in the comments- look it up).

Guys you are looking for a hero, but your personal Mercury has no wings. BTW, research CAN be refuted. When I was getting my PhD it was astounding to find out how we were able to publish, even with acceptable stats that appeared valid but weren't, simply by stating caveats in the summary (re: population tested whatever).

We are all preemie parents. The major difference is that some people choose life/love and don't stay in bitterness. That's ok to do so, to an extent, BUT this affects current new preemie parents. It may poison their relationships with their babies! I know Helen initially had that impact on me, and none of what she stated came true.

Once again, I will state that my child born at 25 weeks did not have any issues, and she is in school with micropreemie twins born at 2.2 pounds and 1 pound who are also totally intact (the 1 pounder is short).

The mother and I frequently discuss if we have a moral obligation to enroll our kids in follow-ups, since we're off the map, but ultimately choose to move on (with guilt). Another little micro view on why I don't trust the research.

(BTW she was initially testing retarded at follow-ups and is now gifted and out of the follow-ups).

Anonymous said...

Helen Harrison to "TPD" 9:34 who
asks:

"What is your relationship to the website prematurity.org? I know you said it is "not yours." OK, fine. What is your relationship to it exactly?"

and

"If you choose to be vague in answering these direct questions, I will assume that you are concerned that the answers will expose something you do not wish others to see."
****

1) OK, let me be as clear as possible: my relationship to the prematurity.org website is
none! zero! nada!

Whoever runs that site is acting on his/her own. The piece on "mild" disability was taken from a long-ago series of posts I wrote to an Internet list ( I would guess it was preemie-list from the textual evidence).

I believe that either Anne Casey, or her husband or, perhaps, it was Allison Martin of preemie-child, who asked me, a long time ago, for permission to use some of my posts on a website. I told whoever it was that s/he was free to use anything I'd posted.

I do not post much on either the preemie-list(s) or the preemie-child list due to time constraints, so nothing new is up there by me that I am aware of.

I just visited the website in question for the first time in years, after you -- or someone else in your group -- tried to make an issue out of it.

I suggest, if you have a problem with my posts being on other people's blogs or websites -- and there are many that have chosen to include my writing, that you contact the sites or blogs directly and give the owner your reasons for why you believe they should take the material down.
***

Next, "TPD," you ask:

"(2) When you said the other day that

"Telling new parents the truth about prematurity and outcomes will always make "the messenger" into a villain -- at least in the short run. No one wants to hear bad news, especially when there are no options."

then followed up with

"That is why I think OB-GYNs should be giving parents the information when they have a chance to act on it."

and

"I have been in correspondence with several neonatologists who tell me that it is precisely *because* micropreemies (by which we mean <26 weeks) have outcomes as poor as infants born with genetic anomalies options should be offered to these parents."

(a) What did you mean? What actions do you think parents might take, and

(b) what is the timeframe associated with "when they have a chance to act on it." "

***
I have already answered these questions on this blog many times in many places. See, for example, my post (above) on this thread of May 15, 11:03 PM.

But since you and your friends seem a bit distraught and, perhaps, unable to read carefully, let me say it again, in different, easy words, as explicitly as I can:

Whenever the risk of death and disability, along with the pain and experimental/harmful nature of the proposed treatments are so great that reasonable people differ on whether treatment should be attempted, the parents should have the deciding voice. They should be allowed to make a choice about whether to pursue aggressive resusciatation or whether to offer the baby comfort care at delivery.

For many people, the area in question is <26 weeks, though someone here has suggested 28 weeks as their own comfort level. I support that person, but would settle for just giving parents options below 26 weeks. Neonatologists *do* have to make a living, after all.

But politics, and there are a lot of politics and interests involved here, is the art of the possible, and I believe we should never make the perfect the enemy of the good.

So I would say that the time frame for acting on honest, complete information would be any time during the early pregnancy when a serious threat to the health of the fetus or mother is discovered. This could involve abortion if that is the parents' wish -- though I do not counsel or recommend abortion. Some families might wish to avoid labor stopping drugs or procedures, and let nature take its course -- another option.


But what I do counsel, if parents want it, is comfort care for a baby born so prematurely that intact survival is unlikely. I think the parents, who must live with their decision, should be the ones (within limits, as described above) to decide the degree of risk, pain, and disability they are willing to have their baby undergo.

To put it most simply: parents whould have the informed choice to refuse resuscitation in favor of comfort care for babies born below 26 weeks.

They should also have the absolute right to insist on resuscitation and full-scale treatment if that is their choice.

These views reflect statements by the American Academy of Pediatrics and the views of many ethicists, clergymen, members of the community, and statements on neonatal guidelines issued by a number of states such as California, Wisconsin, and Colorado.

Is that clear enough for you, "TPD"?

Helen

Anonymous said...

Helen Harrison to Anonymous 1:12 who brings up our old friend "Neonatal Doc":

Neonatal Doc stopped his blog (and similar medical blogs went private) when a news article in the Detroit Free Press outlined possible violations of patient confidentiality and concerns that "doctor blogs" might be revealing information that could provide material for malpractice suits. As I understand, complaints from other nervous doctors and a risk averse hospital attorney led Neo Doc to stop the blog.

I had nothing to do with it, although I did request at one point that he take down the posts on his blog in which some of you who are posting here right now began threatening me personally in very creepy ways.

Neo Doc and I privately corresponded, cordially, I might add, and he suggested we meet sometime at one of the medical conferences.

I'm not sure what you are talking about when you say I was "thoroughly refuted" on that blog. Perhaps you have some documentary evidence to offer?

And what exactly was the subject in which you got a PhD? At what University? And didn't they teach you that a few short-term, anonymously-reported anecdotes do not constitute good evidence? Especially when contradicted by large bodies of prospectively collected, geographically-based, multicenter data objectively collected by reputable physicians?

Again, if you have problems with the evidence from the NICHD, the Vermont-Oxford Network, and EPICure, please address your problems to the physician- researchers involved in these studies, not to me -- I just quote their data, and give you the references so each of you can check it out for yourselves.

Do your homework, "Doc."

Helen

Anonymous said...

TPD.

Yes, perfectly, thank you!

It obviates neither my specific concerns as stated above, however, nor my general concerns that you are the antithesis of the kind of person I would endorse as a spokesperson regarding prematurity.

But that's my problem to think on.

Anonymous said...

Helen Harrison to "TPD" who wrote:

"you are the antithesis of the kind of person I would endorse as a spokesperson regarding prematurity.

But that's my problem to think on."
***

I have never asked for, nor do I want, an endorsement from you.

And yes, you do have a "problem" that you really need to "think on."

Helen

Anonymous said...

Speaking of the parents right to choice, what does everyone think of the recent headliner, Judge rules family can't refuse chemo for boy? This action is huge and affects so much!
-Tammy

Anonymous said...

Helen Harrison to "Tammy":

The decision is in line with many other decisions made previously and is hardly "huge." Jehovah's Witnesses are often taken to court over refusal of transfusions, for example.

I don't think it really affects the parents' choices that I have referred to.

Anonymous said...

In fairness, Helen makes at least as many (if not more posts) here than TPD. Seems a little hypocritical for her to call TPD a hijacker yet she seems uncomfortable with having the same label applied.

I like coming here for information and debate on both sides, but it is seriously offputting to witness Helen so unwilling to be fair to others who happen not to agree with her.

I have seen Helen insist many times that others stop "slandering" her. Helen, I suggest you do the same. Unless you have some genuine proof, please stop these ridiculous attacks on TPD. It lends no credibility to your arguments whatsoever.

Some of us, btw, are pretty happy with our preemies' outcomes. Just because you do not happen to be one of them does not mean we do not exist.

Anonymous said...

Helen Harrison to Anonymous
who wrote:

"Seems a little hypocritical for her to call TPD a hijacker yet she seems uncomfortable with having the same label applied."

I have never called "TPD" a hijacker.

Read more carefully, please!

Helen

Anonymous said...

I can't believe I'm still being sucked into this, but Helen and anyone else can go to neonatal doc and see that...

Someone gives him a head's up, from a different site, that Helen is inquiring (with full post) about the steps needed to report him. Check for yourselves.

Helen, you are doing yourself no favors here! This behavior is what makes you seem nutty. It's "TPD" now, as if she is part of a collective internet gang? Seriously?

I guess you didn't do that to neonatal doc, yep, the same way that you stated elsewhere in his blog that your son could "not play 2 notes" on his guitar, yet on this site you have documented his musical abilities. (The last time I posted this it was cut by PE- please keep it up this time as it is relevant to my point).

That's why I don't trust you and believe you have a pernicious agenda. Anyone can look this all up.

23wktwinsmommy said...

I'm glad Helen was able to spell out her views clearly in the midst of this accusatory "conspiracy theory" because I can get to the root of *my* "dilemma" related to "timelines." (Sorry for going off topic, but that has been done many posts back.)
I do not disagree that parents should be entitled to make decisions on resuscitaion when the statistics of mortality and severe disabilities is more than likely (what percentage this is I do not claim to have an opinion on...I haven't researched that enough.) For example, the statistical evidence (I'm basing this off of the NICHD tool www.nichd.nih.gov/neonatalestimates) of my children, with the "numbers" plugged in gave a very dismal outcome, I knew this as I'd used the tool before. I *personally* chose to intiate resuscitation and then make a decision about providing *only* comfort care should certain things arise (I've stated those things here before.) After soul searching, and breaking out of my own personal experience, (I admittedly was "stuck" on seeing things through our experience and then realized we are extremely "lucky" in terms of outcomes.) I understand and agree that parents should have the right to refuse initial resuscitation at this gestational age, and again, when survival and severe to profound disabilities are very likely.
But in order to really explore the ethical dilemma you need to come to a gestational age where care is automatically intiated because survival is so likely and the "outcomes" are not profoundly to severely "bad." SO I plugged in the best case scenerio possible on the NRN data. A singleton, female, 1000 gram, 25 weeker whose mom had antenatal steroids. This infant, if vented, has a 95% chance of survival, a 91% chance of survival without profound neuro impairment, and an 84% chance of survival without severe impairment.
Now, the opinion has been expressed that some would opt, or would support a parent, who didn't want anything done for an infant less than 28 weeks. We saw the statistical information on the best case scenerio for a 25 weeker, what do you expect it to be for a 26 weeker, a 27 weeker, a 27.5 weeker? Herein lies the problem for *me.* As gestational age increases, liklihood of survival dramatically improves and liklihood of profound to severe impairment decreases (dramatically from, say, 23 weeks.)
Add to the fact that many 26, 27, 28 weekers breathe for hours, and sometimes "forever" without mechanical ventillation, perhaps this should be a consideration, and an additional reason many hospitals automatically "intervene" at a certain gestational age (at 25 weeks at our NICU and many others; but on the other side does NOT resuscitate before 23.1 weeks.)

If the argument arises that the child might not have profound or severe impairment, but may have other "disabilities" then my *personal* dilemma is we are allowing people to choose NOT to save a life (when survival would be very likely) because of fear of a nonprofound or nonsevere impairment.
Sure, there are many things preemies are at risk for that don't fall into the parameters of profound and severe, and an ELBW infant has a strong liklihood not to be "caught up" or "perfect" but *I* think it's a slippery slope when you are opting to deny medical care when survival odds are so high and profound to severe impairment is relatively low.

I understand other people feel differently, and this is simply *my* opinion, but instead of accusing people of being in on some crazy conspiracy theory, or questioning people's motivations (which for the record, my motivation is to confront and explore the tough issues and come to my own personal opinions through trying to understand different perspectives, all while staying true to my belief that people with disabilities have value and we must uphold respect and inclusion of people with all abilities...I'm pro-choice by the way); I figured I'd try and add a comment with an opinion that wasn't insulting or pointlessly argumentative.

Anonymous said...

Helen Harrison to Anonymous 1:39 AM (!!) who wrote:

"I guess you didn't do that to neonatal doc, yep, the same way that you stated elsewhere in his blog that your son could "not play 2 notes" on his guitar, yet on this site you have documented his musical abilities. (The last time I posted this it was cut by PE- please keep it up this time as it is relevant to my point)."

My son cannot play a guitar, period. He does not have the manual dexterity.

What he can play is an electronic keyboard (using two fingers).

And anyone who has the stomach for it can go back to Neonatal Doc's blog and read it in its entirety. I think you will recognize some of the same "anonymous" posters who are now pitching their verbal tantrums here.

Helen

Future of Hope said...

To 23WkTwinsMommy:

This is taking things OUT of the context of prematurity, and simply in the context of CP regardless of root cause. It is very hard to classify CP with simple Mild/Moderate/Severe because of so many variations. Here is a portion of a classification system that is currently being used. The entire document is much to long to post here, but I can send it to you privately if you would like.

Gross Motor Function Classification System
for Cerebral Palsy (GMFCS)

BEFORE 2ND BIRTHDAY

Level I Infants move in and out of sitting and floor sit with both hands free to manipulate objects. Infants
crawl on hands and knees, pull to stand and take steps holding on to furniture. Infants walk between
18 months and 2 years of age without the need for any assistive mobility device.
Level II Infants maintain floor sitting but may need to use their hands for support to maintain balance. Infants
creep on their stomach or crawl on hands and knees. Infants may pull to stand and take steps
holding on to furniture.
Level III Infants maintain floor sitting when the low back is supported. Infants roll and creep forward on their
stomachs.
Level IV Infants have head control but trunk support is required for floor sitting. Infants can roll to supine and
may roll to prone.
Level V Physical impairments limit voluntary control of movement. Infants are unable to maintain antigravity
head and trunk postures in prone and sitting. Infants require adult assistance to roll.

BETWEEN 2ND AND 4TH BIRTHDAY

Level I Children floor sit with both hands free to manipulate objects. Movements in and out of floor sitting
and standing are performed without adult assistance. Children walk as the preferred method of
mobility without the need for any assistive mobility device.
Level II Children floor sit but may have difficulty with balance when both hands are free to manipulate
objects. Movements in and out of sitting are performed without adult assistance. Children pull to
stand on a stable surface. Children crawl on hands and knees with a reciprocal pattern, cruise
holding onto furniture and walk using an assistive mobility device as preferred methods of mobility.
Level III Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips
and knees) and may require adult assistance to assume sitting. Children creep on their stomach or
crawl on hands and knees (often without reciprocal leg movements) as their primary methods of selfmobility.
Children may pull to stand on a stable surface and cruise short distances. Children may
walk short distances indoors using an assistive mobility device and adult assistance for steering and
turning.
Level IV Children floor sit when placed, but are unable to maintain alignment and balance without use of their
hands for support. Children frequently require adaptive equipment for sitting and standing. Selfmobility
for short distances (within a room) is achieved through rolling, creeping on stomach, or
crawling on hands and knees without reciprocal leg movement.
Level V Physical impairments restrict voluntary control of movement and the ability to maintain antigravity
head and trunk postures. All areas of motor function are limited. Functional limitations in sitting and
standing are not fully compensated for through the use of adaptive equipment and assistive
technology. At Level V, children have no means of independent mobility and are transported. Some
children achieve self-mobility using a power wheelchair with extensive adaptations.

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...

TPD.

"If the argument arises that the child might not have profound or severe impairment, but may have other "disabilities" then my *personal* dilemma is we are allowing people to choose NOT to save a life (when survival would be very likely) because of fear of a nonprofound or nonsevere impairment.
Sure, there are many things preemies are at risk for that don't fall into the parameters of profound and severe, and an ELBW infant has a strong liklihood not to be "caught up" or "perfect" but *I* think it's a slippery slope when you are opting to deny medical care when survival odds are so high and profound to severe impairment is relatively low.*

Yes.

Anonymous said...

I couldn't agree more with previous posts. What bothers me the most about many of these assumptions about long-term outcomes for preemies is that the "data" or the should I say the interpretation of the data frequently "lumps" together 23-27 weekers for example which can have vastly different outcomes. My 27 week twins were never ventilated, had surgery etc. It is a truly slope.

Anonymous said...

Helen Harrison to 23 wtm:

I agree with you that this is a difficult question. I believe it is one in which the individual values and wishes of families should predominate. In your case, you acted on your values and you are satisfied with the outcome. Others may have different views, and I would respect those views, as well.

If I were a parent facing an extremely preterm birth I would first go to the NICHD website.

I would also note (from my personal experience) that many disabled children do not show up as seriously disabled at 18 to 22 months.

My son, who will never live independently, wouldn't have. He was ambulatory by 22 months and even at age three was said to be "advanced" socially and intellectually by the developmental psychologists at our NICU follow-up clinic.

At age 33, he is "mildly" retarded (IQ 59), has "mild-moderate" CP, autism, and more. He cannot live independently and we care for him at home. He is in and out of the hospital for prematurity-related problems that struck in his late twenties and early thirties, including his (premature) heart attack last summer.

For me and my family, the ability for eventual independent life is the marker of whether or not a child is severely disabled. And many children who do not show up with problems in the early stats will never live on their own.

I would also take into consideration the enormous amount of medical suffering that would be necessary for a child to reach such an outcome. Not to mention the on-going medical suffering that would be necessary to treat the life-long effects of prematurity. These have not been easy on him or on us.

I would also consider the very high incidence of psychiatric illness in survivors of the NICU. I would keep in mind how devastating some of the "mild" outcomes (which are not considered in 2-year NICU follow-up)can be.

Then I would make the choice that best reflected the values of my family, always asking myself: "What would I want for myself if that were me lying there?"

Helen

Anonymous said...

Helen Harrison to anon 11:34:

Any preemie who does not need ventilation or surgery has a good chance at an excellent outcome.

As part of a large multi-national follow-up project, I visited Jamaica several years ago to see their school age preemie population. When these children were born, there were no ventilators in the preemie nursery. Many <1500 grammers survived, nonetheless, and did well. On the entire island there was only one preemie with "mild" CP (so mild that one groups of docs said they wouldn't classify her as having CP, only clumsy child syndrome).

I would personally want supportive care for any preemie of my own who was healthy and robust enough not to need mechanical ventilation or surgery.

Helen

Kate K. said...

Miss a day on the TPE, miss a lot. I have a lot of thoughts regarding what was said yesterday, but I think that I'll focus on the topic of anecdotes vs. studies.

I'm a social scientist. I teach quantitative methods/statistics, although I have studied more "qualitative" approaches too. The types of research questions that interest me lend themselves to quantitative methods b/c I want to be able to "generalize."

As a preemie mom, I read a lot of outcome studies. Such studies can't tell us how a particular child will do and they aren't w/o flaws. There is the potential that a study that hasn't been generated via a probability sampling approach will be biased. In academicians' pursuits to get published, they sometimes do screwy things with their data, which they don't always mention in their manuscripts. I tend to be a purist, taking the approach that I'd rather be right than published.

That said, when you see a preponderance of studies suggesting a given outcome, that to me is a much stronger indication of a "truth" than anecdotes.

I also believe that anecdotes have their place in research. When unusual cases (good or bad) appear, they can suggest to scientists ideas or things that need to be studied further. TPE is a brilliant example of an anecdote who suggests to us that more research is needed on the long-term effects of prematurity. And this brilliant anecdote has attracted other anecdotes who further the argument that more long-term studies are needed.

23wktwinsmommy has already expressed some of the feelings that I have about making judgments about neonates.

When I looked at the NIH neonate website mentioned by 23wktwinsmommy, my son was a year old. His projected outcome of “Survival Without Moderate to Severe Neurodevelopmental Impairment” would have been somewhere between 14%-23%, depending on if I mark yes or no on the "Antenatal Corticosteroids" question. I received them about a half-hour before delivery, so I'm guessing they didn't help much. I certainly didn't get the several doses recommended, but we didn't have a choice b/c my son's heart rated started dipping at that point.

I don't know if knowing those statistics would have changed the choices we made. I don't think that they would have. I guess that we felt such a sense of responsibility to our son, that we would have continued to support him as long as his body wanted to continue. But there are some situations where I can understand opting for "comfort care." We thankfully didn't reach those situations. Our son was born at 25 weeks 2 days at 570 grams.

I suspect how one interprets studies and anecdotes when in the NICU varies greatly from person to person. I did a lot of internet research when my son was in the NICU b/c the doctors, while explaining the risks, were not inclined to assign probabilities to those risks. When I found an interesting study on the internet, I would then use my university's library to track down the actual journal articles, as a lot of what is on the Internet is hyperbolic and sometimes inaccurate.

I also tried to find positive anecdotes too...for hope. The one that gave me hope was Thomas King (25 weeker born in 1994) from "Tommy's Cybernursery" (see http://kingproductions.com/). Just wanted to see what the positive side of the preemie distribution looked like.

One thing that I tried to keep in mind when interpreting preemie outcome studies was that there were many factors not included in the studies that could contribute to the outcomes as well. Parental background (e.g., health, income, IQ), breast feeding, positive home environment, etc. I mention the latter b/c sadly, some studies suggest that preemies are more likely than FT babies to be neglected and abused on average.

I read just about all of the articles on prematurity.org when my son was first born. One that intrigued me was from Helen on breast feeding. Here's the link: http://prematurity.org/research/helen-breastfeed.html

Helen wrote: "The evidence that breastfeeding makes a major difference is so much stronger than the evidence for any other type of intervention, including EI and all the remedial therapies, yet breastfeeding receives far less support. I think it is time to reexamine our priorities."

After reading that, I read many studies on breast feeding. They gave me motivation to pump 22 months. My son outpaced my supply at 5 months adjusted, but I still managed to give him some breast milk thereafter.

I don't of course think that breast milk is a cure all for prematurity, but it would be nice to know the extent to which it can help minimize some of the problems. It would be nice to know the dosing effects of it too.

Helen, given what you've said on this thread about prematurity.org, I was just wondering if your excerpt on breast feeding was outdated or the writing taken out of context? Have you seen any newer studies that would shed light on breast milk's contributions to preemie health?

Best wishes.

Kyrsten said...

I think that's everything "in a nutshell:" making informed *personal* choices.

I would give anything to have my (28 week, PROM'd at 26 weeks, PPHN, ventilated, bilateral Grade IV IVH'd, septic) firstborn here with us-- but we were at peace with the decision to "let go and let God" when it came to discontinuing his life support (he was given comfort care in his last hours).

We were put in this situation despite the fact that "the odds" were "for" us, given his GA and size.

When I was pregnant with my (surprise) next child, we, too, discussed in what situations we'd want only comfort care given.

It *is* difficult to make such choices, because statistical data is just that-- statistical, not situational.

Anonymous said...

Helen Harrison to Kate K.:

The evidence shifts back and forth on breastfeeding (and its many combinations and permutations with preemies), but on balance I think it is still considered a positive factor.

I know Steve and Timothy Laurie, the 1000 g. preemies who did so well (mentioned in another entry and in the previous thread on this blog), were breastfed. But that is just anecdotal evidence, alas.

My own son received my breast milk but we were not able to move to full breastfeeding because of his weak suck secondary to CP. It may simply be that babies who are more neurologically intact are better nursers.

However, the study by Alan Lucas on the advatages of breastmilk for preemies involved tube feeding of breast milk.

Nutrition of all sorts is currently a very hot topic in neonatology. I'll do a breastfeeding search on the most recent studies from SPR and see what comes up.

Helen

Anonymous said...

I am anon 5/17 11:14

When I said my personal cutoff was 28 weeks, what I meant was that I would not want full resuscitation done on a baby requiring full vent support. I do understand that many such early babies come out breathing, and if I had one that did, I would want full NICU care. But I think a baby born that early without making attempts to breathe is unprepared to live outside the womb, and I couldn't bear to watch my child suffer.

I also would possibly choose not to stay on bedrest doped up on mag sulfate at 23 weeks if it became obvious that labor could not be stopped long enough to reach 28 weeks. With my oldest, I had one episode of contractions at 22 weeks that were stopped with terbutiline(sp?), allowing me to deliver at 37 weeks. If they couldn't stop the contractions, I would not have attempted to make 24 weeks and then deliver.

One thing that really broke my heart is in the story of Anne McDonald. She said in the awful institution she grew up in, many of the other kids were preemies whose families just couldn't deal with caring for such a profoundly disabled child (http://home.vicnet.net.au/~dealcc/Anne4.htm). I would hate for any child of mine to experience even half of what she did if they were disabled and lived longer than I do.

23wktwinsmommy said...

Krysten,

Sorry, I thought I made it obvious...I completely support providing comfort care at any gestational age based on situations like you mentioned (again, we had made the same decisions for ours which included only comfort care for large IVHs and other situations.)
So yes, clearly the statistics for an "older" preemie can be great, but there can be particular situations were comfort care is the ethical decision for a family who choses.

Anonymous said...

TPD.

Resuscitation is not merely a matter of parental choice. In many circumstances, it is and should be.

But it many other cases, it can be argued that the child has rights to live that outweigh the parents' rights to withhold care.

The statistics and studies are useful tools, some would say they are necessary to the analysis. But they are not sufficient. What weight and generality should they be given is the question in my mind. It's a very complex issue without a single answer, and the temptation is to resolve the issue by reducing life or death to a formula: input known information, analyze based on the best studies currently available, and output = The Truth. Based on The Truth, parents get final decision.