Wednesday, October 31, 2007

Dear Dr. Anwar,

October 27, 2007 marked 9 years since the day we met. For my husband and I, it was the scariest day of our life. I was admitted to the hospital, 23 weeks pregnant, with premature rupture of membranes. We were told that, statistically, our baby would be born within 24 hours.



I asked to speak to a neonatologist and you took some time out of your day to visit with us. Based on what I had seen on television and read in magazines about preemies, I fully expected you to walk in and tell us that our baby would be just fine. I was scared and desperately needed to be reassured.



Instead of reassurance, you delivered honesty. You explained that there would be a good chance that our baby would not be able to walk, talk or lead a normal life. You listed other long term issues that she could face, but I was so out of my mind with fear, I don't recall your exact words. You informed us that we had the option of letting the delivery team know that we did not want to have her resuscitated, but instead we could just hold her during her final moments. You told us that you could even help us make those arrangements. You were compassionate and you let us know that you would choose not to resuscitate if it was your own wife in the situation.



Being scared and having an incorrect perception of preemies, I became angry at you. I don't remember my exact words to you but I'm pretty sure they were not pleasant. I let everyone know how unhappy I was, all the way up to the director of the hospital. For this, I am incredibly sorry.



2 days later I was transferred to a hospital with a level 3 NICU. Our daughter, Paige, was born at 25.5 weeks, at 805 grams. She spent 78 days in the NICU and upon discharge, we were told that she had sailed through the NICU and would catch up to her peers by age 2 or 3.



My husband and I thought of you every time Paige reached a milestone. Your words never left us. It was almost as if we felt that we needed to prove you wrong. Paige does walk, she talks and is quite intelligent.



But, her life has been anything but normal. She suffers with an axiety disorder, OCD, has very mild CP, chronic constipation, epilepsy, severe sensory issues, social differences, daily headaches, daily stomach aches, chest pain, leg fatigue and pain in her feet. The long term issues related to prematurity are something that Paige deals with every day of her life. Over the last (almost) 9 years she has endured many medical tests, a few surgeries and constant doctors appointments. It seems to never end.



Until she reached that magical age of 3, we lived under the belief that all would eventually be ok. After all, all of the preemies shown in the media are fine, without any lasting issues from their early birth.



After her third birthday passed we started to think that her issues were our fault. She had behavior issues that were draining us all. Her sensory issues were at their worst and her social differences were becoming more apparent.



It was at this time that your honesty was appreciated. Your words became comforting to us. Remembering that you had said there may be long term issues, helped us to realize that it was not our fault. I began researching and found that long term issues in preemies were actually quite common.



Dr. Anwar, over the years your honesty has become more and more relevant in our life. So many parents were never given the information that you delivered to us 9 years ago. In turn, they are shell shocked when their child passes that magical age of 3 and have not caught up to their peers.



When I became unexpectedly pregnant last year, I made my wishes known that I only wanted my baby to receive comfort care if he was born before 24 weeks. Thankfully I was able to carry our son to 35.4 weeks but I never would have been able to reach that decision had you not given us that choice 9 years ago.



I wanted to take this time to thank you and encourage you to keep being honest. Even if the information you deliver is not well received, it will be important to those parents in the future. Long term issues related to prematurity are real and more parents need to be told.



Respectfully,



Stacy

63 comments:

Ropheka said...

Nice Blog :)

C & V said...

Stacy, have you been able to send your letter directly to Dr. Anwar? If so, has he responded?

It would be interesting to know how many parents have responded positively vs angrily to comments like this from Dr. Anwar, or any other neonatologist . . . it would be a great straw poll on your blog and/or a great study, don't you think?
Chris and Vic

The Preemie Experiment said...

Hi Chris,

The letter has taken me weeks to write. Everytime I would start it, I wasn't happy with the tone of it. My feelings for him have evolved as my journey has continued. I now realize how much he has meant to us. I also feel horrible for the way I treated him. After all, he was just being honest.

I haven't sent it yet. I wish I could track down an email addy for him. I would be afraid that he would never get it if I sent it snail mail. Or maybe I'm just not brave enough to mail it.

Hugs,

Stacy

terri w/2 said...

Stacy - this was a wonderful letter. Dr. Anwar sounds like a very compassionate, caring soul. You should, if you can, track him down and send this to him.

The letter kicking around in my mind to our neo for the past 21 years would not be nice. Our situation was far different than yours, no options, no partnership, and medical abuse disguised as "research."

helen harrison said...

Three years ago, I gave a talk at the National Perinatal Society annual meeting in which I used our son Edward's birth and life as a way to frame the issues involved in determining pre-term outcomes.

The talk was entitled "The Tip of the Iceberg" which is, unfortunately, all that preemie follow-up statistics tend to show.

Afterward, a sweet, white-haired woman came up to the lectern and re-introduced herself to me. She had been one of Ed's neonatologists 3 decades ago, and had been astounded to hear my talk and learn of Ed's outcome -- IQ of 59; CP; about 20 prematurity-related surgeries;near blindness; autism, etc.

Apparently the entire NICU thought Ed's outcome had been terrific, and that we were all living happily ever after!

She told me that she had left the practice of neonatology for the same reasons I described in my talk (poor outcomes, devastated families), but she had still thought (based on feed back from the follow-up clinic, no doubt) that Ed had been one of the success stories.

At a talk just two weeks ago, I learned how some neonatologists insist on treatment, even for babies with very poor prognoses, because they have heard someone tell them about a baby with a grade 4 brain bleed who is "doing great." I just hope this baby "who did great" with a major bleed was not a reference to our son!

We should give honest, continuing feedback to the people involved in our babies' treatment. They need to hear from us and know how we and our children are coping, or not coping, in later life

Kathy said...

I cringe a little bit when I remember our first meeting with a neonatologist. (I was at 30 weeks, had been on bedrest at home for the previous month with preeclampsia.)

The doctor was very optimistic, given that we were already so far along, I'd gotten steroid shots, and we were stable enough that delivery was still days, if not many weeks, in the future.

Probably, from the perspective of someone with a micropreemie, what we went through sounds like a piece of cake, but at the time, we were scared out of our minds.

But, I so desperately wanted to hear that our daughter was going to be EXACTLY as we imagined, and we'd imagined her as a Poet Laureate or Chief Justice. So, talking to the doctor about the statistics and outcomes for preemies, I actually said, "But our chances will be better than those preemies that were preemies because something was wrong with them, right?" The doctor got a VERY odd look on his face and steered the conversation in another direction.

I don't know what I was thinking. Maybe that prematurity mostly happens to moms who are on crack and babies with serious birth defects, and we were going to be different. The funny thing is, looking back, the placenta was clotted, the umbilical cord wasn't moving blood to the baby, and she had IUGR that showed up in the 20 week ultrasound. How on earth could I think that I was growing a healthier baby than someone who had a normal pregnancy until they went into preterm labor?

Basically, someone in that situation isn't thinking straight, and I'm sure that your neonatologist understood that. And I bet he'd appreciate this letter.

23wktwins'mommy said...

I always find it very therapeutic to put my thought in letter form.

I've been thinking about a topic related to this for sometime now. What EXACTLY should neonatologists say to parents who are in preterm labor at 20something weeks gestation? There is SO much that can unfold in the NICU and beyond, it would literally be hours of conversation, which often there is no time for. How do you explain severe sensory issues to an expected parent? How do you describe the numerous therapy sessions that you may have per week? How do you explain how your life will be completely altered by the birth of this extremely premature baby?
I don't think you can really describe it. I'm glad you now find comfort and understanding in what Dr. Anwar said, but as you know, even he could not have predicted the issues Paige struggles with, and the things she excels in. I know many here argue that we have to be realistic to parents about what to expect when their child is born too early; and this goes far beyond saying..."it's anything from glasses to CP." But that leaves a lot in between, and how do we pinpoint just what to say to parents?
I was asked by a NICU nurse if I would have preferred to have a little "harsher/more realistic" explanation of what to expect long term for my 23 week twins while I lay in bed contracting at only 23.2. The answer is no. I was in no way shape or form listening to anything he was saying at that point regarding long term outcomes. I do recall him saying that no child born at this gestation will ever be 100% "normal." Of course this doesn't tell you everything, but it does dispel the "catch up by age three" notion. I just wanted to know the chances of their survival, and figured I'd deal with the aftermath when I brought the kiddos home.
When they were very sick and we had head ultrasounds and frequent desaturations the nurses and neos made it clear this was par for the course and no one could really tell me the overall impact everything they experienced in the NICU would have. As much as I could, I accepted that fact. I couldn't expect anyone to tell me if they would walk, talk, PO feed, etc. Of course these are common issues preemies struggle with, but there is such a varying degree.

No one could have told me that my daughter would be crawling, pulling to stand, and taking assisted steps at 9 months adjusted age. No one could tell me that my son would still need assistance sitting up at 9 months adjusted age, but would be able to crawl all over the floor and say 3-4 "words" at the same adjusted age. No one could tell me they would enjoy eating and that my son's projectile vommitting would nearly disappear in a few months after bringing him home. They couldn't know that both would have no hearing loss, and at this time do not need glasses (in spite of both having ROP laser surgery in both eyes). They couldn't know that my daughter would have a paralyzed vocal cord, but in spite of that, is vocalizing. No one could tell me how it would feel to have them shoot a huge smile to me and crawl as fast as they can and put their hand in mine to be picked up every day when I come home from work.
No one could have told me if they will attend mainstream classes. No one could have told me if they will have psychological issues. No one can tell me what I can expect as the years go by.
All I know is that I don't expect that, after being born 17 weeks too soon, and undergoing all they did, that they will ever outgrow the issues related to their prematurity completely. It is just unrealistic to expect that. They won't "catch up by age 3," and to me, that's okay.
Stacy says she wouldn't have resuscitated her son had he been born at the gestation my twins were. I am not here to try and change minds or make people feel bad about their personal choices. All I can say is that at 23 weeks my twins are doing better in areas than babies born at 24, 25, 26, weeks, etc. They are further behind their micropreemie "peers" in other areas (respiratory wise.) There would have been no way of knowing this over a year ago when the neonatologist came down to my L&D room to have a consult.
But I'm glad no one ever gave us false hope that everything would be perfectly fine, because there is no replicating a mother's womb, and that's where babies ideally belong for 40 weeks.
When they are born too soon there are many long term repercussions. Perhaps OBs should have a standard list of every possible effect of premature birth and parents should educate themselves long before they wind up in L&D at only 20 something weeks along in their pregnancy. Just bare in mind parents, that what one 23 weeker is dealing with, another might not be. A 27 weeker may have more significant long term issues than that former 1 pound 23 weeker. Just search blogs of these families, and see for yourself how children born at different gestations are doing.
And if you need your child to be perfect, then I have no advice for you in parenting whatsoever. When you have a child who isn't "perfect" you learn a little something about unconditional love. And I just can't imagine having chose to miss out on any moment I am able to share with my former 23 weekers, and this would be true even if they weren't doing as well as they are.

The Preemie Experiment said...

23wktwinsmommy wrote: "Perhaps OBs should have a standard list of every possible effect of premature birth and parents should educate themselves long before they wind up in L&D at only 20 something weeks along in their pregnancy."

Education on the long term issues related to prematurity needs to start even before one gets pregnant. High school health classes is not early enough in my opinion. Changing the way the media reports is another way. I could go on forever but the topic is actually an upcomming post.

"And if you need your child to be perfect, then I have no advice for you in parenting whatsoever. When you have a child who isn't "perfect" you learn a little something about unconditional love."

I am not sure if this was directed towards me so I am going to refrain from defending myself until further clarification. But, let me just say this... No where on my blog will you find that I have said that Paige should not have been saved. No where on my blog will you see that I have said that I wish Paige was perfect. No where.

I do, however, wish my child was not in pain. I do wish my child was not suffering with horrible mental health issues. I do wish I did not have to hear my child say that she wishes she was dead last night because of her thoughts. I cried myself to sleep last night. No child should feel this pain. No parent should either. If I could change her into a "perfect" little girl, would I do it... YOU BET! What parent would want a child who is in physical and mental pain? Would you?

As far as unconditional love, parents who make the decision NOT to recuscitate know a LOT about unconditional love.

23wktwins'mommy said...

It was most definitely not directed toward you.
What I'm saying is, when you get pregnant and have a child, regardless of what happens in your pregnancy and during birth, there is always the possibility that things won't go as planned. You can't bank on your child being "perfect" no matter what.
No one wants to see their child suffering or in pain. But unfortunately we don't have the power to take that pain away most times. We just have to parent the best way we know how and love our children.
Parents want to know what the outcome will be for their child born too soon. There are no easy answers. If I could change S&E being born at 23 weeks and making it to 40 weeks would I? Absolutely. But I'm not about to live my life wishing my twin's were born at term...they weren't.
Instead of wishing someone had told me exactly what I should expect long term with S&E and how hard it was going to be, (something no one could have been able to do anyway), I just try and do my best as a parent who has children with needs.
As far as unconditional love. It means loving without conditions. It means even if your child has issues, as terrible as they may be, you still love them. I know you love Paige. But she could have had mental health issues had she been born at term. I have worked with many children who have severe mental health issues and were born at term.
I simply disagree that opting not to resuscitate your baby because you don't want your child to experience pain or your afraid of the "what ifs" is completely admirable. In fact, knowing that there are children who are doing well and were born extremely early makes me wonder how people who opted not to try feel when they read about these children on blogs.

I do think there are situations in which support should be ended. However, and this is my opinion, I don't agree that opting not to resuscitate because you don't want a child with feeding difficulties, motor issues, possible sensory issues, etc. is an example of unconditional love. I think it is hard work to have a child with special needs, and I think some people are better suited to parent these children than others. I know my children's lives have value, and it saddens me to think that had they been born to someone else, they may never have had a chance at life.

Helen Harrison said...

I have to agree with Stacy here. No child -- at any gestation -- is "perfect." It is an insulting diversion to suggest that "some" parents are only after "perfection."

I also have to agree with Stacy on "unconditional love" which sometimes means letting go, acknowledging the tragedy inherent in a situation, and choosing the course that means the least net suffering for the child and family.

As far as the "no one could know" argument -- of course no one can say when, or if, a given preemie will hit a certain milestone, but what can be predicted with great certainty is that below 26 weeks (and in most cases below 32 weeks), there is going to be significant brain damage and abnormality that will express itself in a variety of (usually unfortunate) ways as the child gets older. Other organ systems besides the brain will also likely be adveresely affected (g.i.,kidneys, lungs, immune system, etc.)

My son defied predictions in that he walked (sort of) talked (sort of) and even read (sort of) by age 2 to 3. But he is still, at age 32 years, severely, multiply handicapped -- unable to feed or dress himself or leave the house without assistance -- and his prematurity continues to afflict him medically into his 4th decade. It is only expected to get worse as he ages, and pain is a major part of the picture!

As for explaining "severe sonsory issues" to an expectant parent -- I think the term "autism" might help them understand the scope of the problems they and their child may be facing.

We have to start the educational process by dropping the use of euphemisms and wishful thinking, and getting real with expectant parents and the public.

Anonymous said...

Stacy,

True - no where on your blog have you stated that you wish Paige had not been saved, yet time and time again that is exactly what you imply. Not that your daughter, as you now have and love , should not be here - but that generically children of her gestation should not be saved. You go so far as to state that you would not have resucitated your son had he been born at her gestation. As far as educating the public goes, who is your target audience? Pre-teen girls? Teenagers? Pregnant women? Why do you think that they are going to be anymore receptive to this message than you were 9 years ago? Just because you learned the hard way, doesn't mean that they have learned alongside you. They are still going to have the not me/ not my baby mentality. Scare tactics are only going to have them turning away and not listening.

23wktwins'mommy : You seemed to have had an exceptional NICU. It sounds as if your doctors were able to give you the perfect blend of information and hope. If only more hospitals would follow suit, then perhaps the number of anguished and disillusioned parents would decrease.

23wktwins'mommy said...

I agree...our NICU was amazing. Time and time again we were permitted to have family meetings about just how far we wanted to go medically to keep the twins alive...and yes, I may come across as very "pro-life" here, but there were limits to what we were willing to do, which I have shared many times here.
At three months into our NICU stay we were told point blank, "about 50% or more of these kids will have moderate to severe disabilities, it's about an 80% or greater chance for your son because of all he's been through." There were no lies, there wasn't deception, but there was hope. Hope that they would defy the odds, hope that life, once lived, would be better than it sounded on paper. In other words, my children are more than their medical history and diagnoses.
Some of the knowledge and acceptance rested on me as a parent. I researched, I read, I asked questions. I found parents of 23 weekers and didn't expect to have things sugar-coated. I wanted to know the truth. After all, I found this blog didn't I? There was never a point that I believed my children would be unaffected by their early birth. I wasn't afraid to hear that my children might never walk or talk. I realized, at only 23 weeks in my womb, things were not going to be close "normal."
But let me assure you. My children are amazing. I will say this today and I will say this when they are 32. They are so loved and they know it. I am proud of everything they can do, and do what I can to help them with things that they can't. Say it's because I'm a "new" preemie parent. Email me in 30 years and the story will be the same. I'm in it for the long haul, these are my children, they mean the world to me. If they need me to feed them and help them in and out of a wheelchair I will, and I won't complain about having to do it.

I don't comment on this blog to be controversial or to try and present myself as better than parents who disagree with me. I do it because other parents who have found this blog while they are in the NICU or a few months out need to know it's ok. It's ok that you chose life for your 23 weeker. I don't think you want pain for your child. I don't think you are selfish because you wanted him/her to enjoy life with you. Your child is going to face struggles, don't get me wrong. But maybe, you'll see life like I do, and although you will still mourn "what could have been" (the happy birth experience, meeting milestones without therapy, catching a cold and not landing in the PICU, etc.), you will do your very best as a parent and show your child that you are soo thankful for their life and so proud of every little thing they CAN do.
I agree, Stacy doesn't wish her daughter wasn't resuscitated...how could you wish your child was dead? But it is difficult to hear when people talk about how they disagree with resuscitation at a certain gestation. Come to my house for 5 minutes and meet Serena and Edwin. And if you can say these kids were better off dead then I feel really sorry for you.
So new parents, don't feel guilty...you're not alone.

carey said...

Thank you.

I delivered our son, Beckett, at 22.5 weeks. I am glad we chose to hold him and participate in his short time here with us instead of taking life saving measures. My peri, Dr Ney, delivered the information with caring and honesty, but along with that, I, had educated myself on premature births.

_______________

As far as educating the public goes, who is your target audience? Pre-teen girls? Teenagers? Pregnant women? Why do you think that they are going to be anymore receptive to this message than you were 9 years ago? Just because you learned the hard way, doesn't mean that they have learned alongside you. They are still going to have the not me/ not my baby mentality. Scare tactics are only going to have them turning away and not listening.
____________________

Maybe because I live in the age of the Internet, maybe because I was 34 years old, maybe because I had a rescue cerclage at 18 weeks, maybe because I read a book on preemies, etc... I was able to HEAR my peris message.

I, for one, am glad blogs like this exist. I am glad the positive stories exist too. We need both sides and everything in between.

The Preemie Experiment said...

Carey wrote: "I, for one, am glad blogs like this exist. I am glad the positive stories exist too. We need both sides and everything in between."

Very well said Carey. I have followed your blog for awhile now and keep you in my thoughts daily.

Stacy

The Preemie Experiment said...

Anonymous wrote: "You go so far as to state that you would not have resucitated your son had he been born at her gestation."

This is not true. My daughter was born at 25.5 weeks. The gestational limit I had set with my son was 23-24 weeks. His gender had a lot of weight in my decision.

Anonymous also wrote: "As far as educating the public goes, who is your target audience? Pre-teen girls? Teenagers? Pregnant women?"

A new post will be coming soon where we can discuss the ways to educate the public and when is the best age to start this, but as far as my target audience for this blog... I started this blog because there needed to be a place where parents could go for information on why their child had not caught up by age 2/3. They needed to know they were not alone.

"Why do you think that they are going to be anymore receptive to this message than you were 9 years ago?"

They may not be. Or, they may see something on my blog and decide to research it further. They may see something here and decide to talk to their OB about it.

I wasn't receptive to the message 9 years ago because I had only seen preemies on TV and in the newspaper. Oh, and then there are the stories we all hear "A friend's neighbor's cousin was born at 6 ounces and is normal."

So, anonymous, are you suggesting I just give up? Not help others to understand that there are many sides to prematurity?

It won't happen. I realize not everyone will like my blog. Then don't read. But, not a week goes by that I don't receive emails from people thanking me and the people who post here.

People have the right to read about all sides of prematurity. Parents have the right to know they are not alone. Doctors have the right to know that all of their patients don't leave the hospital and catch up by age 2.

And, hopefully, with all of the information shared here, more advancements can be made so lives of future preemies can be improved.

the last spartan said...

I cannot speak specifically as a neonatologist but doctors are poorly educated on delivering bad news. They too are human. As such, a distressed set of parents may make them temper bad news with some hope if for no other reason than "self defense". Unfortunately, the hope may be the only remembered part. It is always reasonable to hope for a miracle but it is very unreasonable to count on one.

Stacy, you were fortunate because this doctor gave you the truth that you needed to hear. Doctors cannot make these decisions for parents as these are value-based decisions. They are personal decisions. IMHO, educating all mothers in detail about birth defects would serve very little if applied to the whole of the general population. It would merely create dramatic fear unnecessarily in the vast majority of soon-to-be parents. This should be a happy and expectant time. Health education should be improved but I don't find that most people want to know the details about what could go wrong. That isn't necessarily a good thing but it's a reproducible observation.
Just my 2 cents

Helen Harrison said...

I really think that, as Stacy said, we need to be reaching out to expectant parents and anyone who hopes to be a parent some day, as well as to the public at large, because we are all involved.

This discussion shouldn't be confined to a conversation between distressed parents in the midst of a birth crisis and a defensive MD.

It should be common public knowledge that prematurity is very dangerous and likely to lead to outcomes that cause the child, family, and society considerable suffering.

I just heard a conference presentation by Anita Catlin, RN, PhD, who researched stories on prematurity in the media. Out of 89 sequentially reported accounts mentioning prematurity, only 1 mentioned the *possibility* of disability.

There is no way for most parents to come into a preterm delivery situation with realistic information based on the misinformation and disinformation that comes from the media, from hosital brochures, from doctors who want to present a happy picture of neonatology, and even from some new parents of preemies on the Internet.

With this kind of misinformation, of course parents react with anger and disbelief when they learn that their child's preterm birth might have seriously negative repercussions.

It doesn't have to be this way. Carey, for example, is clearly someone who can process such information, understand it, and even seek it out.

At any rate, many rare fetal problems are regularly tested for during pregnancy, and parents do not generally object to this testing, even with its implication that things might go wrong.

Evidence indicates that the vast majority of parents want this information and are ready to act on it.

I think it is a question of timing, and when a mom is in preterm labor or in the DR it is probably too late for most.

This should, ideally, be a conversation between the parents and the OB, early in the pregnancy or before pregnancy.

Prenatal advance directives might offer a way to get such conversations started.

The public also needs to know what it is that's being mandated when doctors, or the government, or special interest groups ask for all-out rescue of extremely premature infants (and to the extent the public *has* been polled on the issue, they *don't* want it).

If we are to have all-out rescue, taxpayers need to be willing to come up with the 26 billion+ dollars a year needed to pay for the aftermath.

Currently, taxpayers seem unwilling to do so, and school systems are crumbling under the strain.

In the last 20 years, as a result of increased NICU survival, there has been a 4 fold increase in the number of moderately and severely medically/cognitively/physically impaired children coming into the school systems.

School systems cannot afford to educate these children who can cost up to a quarter of a million dollars per child per year in the more involved cases.

The Boston school system last month reported being devastated by the skyrocketing cost of special education. Regular education is suffering, and no one wants to help.

We are also going to need more in the way of medical and psychiatric facilities, special intensive education for autism disorders, day-care for technology dependent children and adults, and on and on.

We need to take our heads out of the sand, and begin speaking out whenever the media or others try to gloss over, or misrepresent, the realities of preterm birth and its consequences.

I think this blog is helping in a major way! I admire Stacy for her courageous campaign!

Nancy Brown said...

Great Blog!!!

The Preemie Experiment said...

Last Spartan wrote: "IMHO, educating all mothers in detail about birth defects would serve very little if applied to the whole of the general population. It would merely create dramatic fear unnecessarily in the vast majority of soon-to-be parents."

I don't think doctors have the time to educate on every birth defect. So, I do agree with you there. But, I do think there could be literature for expectant parents to be able to read. Docs could suggest having advance directives or at the very least it could be in the literature.

But, as far as creating dramatic fear in parents... what about all of the information given on downs syndrome? I had to argue with my doctor to NOT have the test. Down syndrome rates are far less than those of prematurity. I can think of quite a bit of information I received on DS but NOTHING on prematurity.

Helen Harrison said...

To the last spartan who said:

"doctors are poorly educated on delivering bad news."

Unfortunately, this is a major part of what being a doctor means.

Doctors constantly have to tell people things they don't want to hear: "you must exercise for 30 minutes a day," "you must stop eating so much," "you need surgery to remove your prostate, or breast," "your baby may be delivered prematurely and here's what that means," etc, etc.

No one is obligated to listen, or listen happily, or follow medical advice, but the information should still be made available, and be made comprehensible and meaningful to the patient *by the doctor.*

To the docs out there: We, your clients, are paying you for your expertise, not to tell us only what we want to hear or what makes your day more comfortable.

We realize, of course, that all you can do is lead a horse to water...

But.. the water must be there, and you must lead as best you can. That is your job!

Chris and Vic said...

Readiness is all.
Those who are ready can hear what the neo says to them.
Those who are ready for it, can hear bad news.
Those who are not ready don't hear or perhaps they don't believe what they are hearing.
Those who are in developmental stage of feeling invincible (it cannot happen to me), cannot be ready to hear this stuff.
Those who have never been exposed to pain and hardship cannot be ready to hear about pain and hardship.
Those who have always been privileged expect to always be privileged. They do not expect to be lacking in anything. They are not ready.
So, along with Will Shakespeare, I repeat one of life's biggest lessons for me: that readiness is all.
Chris and Vic

Micromom said...

23 week twins mommy: Im glad S&E are doing well. Realistically though you have to know that they are the exception and not the rule. The numbers your drs ran past you were real(I commend them for their honesty) Most children and specifically even more twins born at the gestation of your twins have a grim future filled with pain, endless drs, etc. Many of their families split over just these issues.

There are worse things then dying and I think it is unfair of you to say that letting a child go is not unconditional love.

No one is trying to make a new or prospective parent feel "bad" for their choice. Quite the opposite. Informed consent is more the point.

terri w/2 said...

Micro mom said: "There are worse things then dying and I think it is unfair of you to say that letting a child go is not unconditional love."

So true, so true. When we were in the midst of deciding to remove life support and let nature take it's course with our daughter following her bilateral grade IV IVH, multiple cardiac arrests due to kidney failure, etc., I never felt more at peace that this was the right decision for HER and was immediately at peace with it. It was the most difficult but the most right and loving decision I've made.

It was the neo who refused our request to remove life support. Within 12 hours, her kidneys began to function. .her cardiac issues began to resolve, but her brain was devastated. . the 5 months she spent in the NICU were nothing short of hellish. The 21 years after have been *filled* with more medical hell, profound disabilities and destruction of our family unit. If she had had a choice, do I think she would have wanted this? No.

Personally, I would refuse the medical treatment that has been heaped on my daughter, but as a parent, had no ability to prevent the so-called "care" she received as a preterm victim.

Love her unconditionally? Absolutely without question. I would not have cared for her for 20 years had there not been unconditional love. But, as micromom said - sometimes loving unconditionally means making the most selfless decision. Unfortunately for some of our kiddos, our unconditional, selfless decisions are overridden by federal law and short-sighted neonatal practices.

C & V said...

Did anybody hear THIS AMERICAN LIFE on public radio, with Ira Glass this weekend?

The title of the 3-act program was "Rest in Peace". The third act was about a woman with a grown son, who had planned all her life to commit suicide in order to avoid dementia, doctors/hospitals, and nursing home care at the end of her life. She and her husband had formed a pact to help one another at end-of-life. But her husband died before she did, and she asked her grown son to help her. They actually rehearsed her suicide.

As bizarre as this may sound, you would have to listen to the program--the grown son's tone of voice, his perspective, his ability to represent and
respect his mother's perspective.

The interviewer, Ira Glass, asks at one point, "Do you think your mother tamed death by way of this plan?" And the son answered in the affirmative.

Though this may give you a jolt (it did me), it helps one to see different perspectives on death and dying--and that, indeed, there are fates worse than death.

Death, to me, is not the the ultimate baddie. My mom, too, has severe dementia, and she now resides in a nursing home, and I can barely keep my chin up when I visit. Living under such extreme restrictions is hardly living at all.

Likewise, our preemies, some of them, have very painful lives. We may give meaning to their lives, such as "It is the will of God," or "She is a ray of sunshine to others. Her smile shows she is in there, that she is happy." To me, that only means that WE, the onlookers, have found meaning in these peoples' lives--not necessarily that THEY, the victims of being trapped in these failing bodies and minds, can find meaning in their lives.

Our giving meaning to their lives may be a selfish act, at times, or a cowardly act on our parts. I think we all have to ask ourselves these questions. How much of our holding on to them is self-serving?
Do we know when to let go?

These are hard questions, hard issues to face---like the woman and her son, in THIS AMERICAN LIFE on NPR yesterday . . . They are disturbing to the core, and we may not be entirely sure when/if we have made the "right" decisions.
And, of course, every case must be examined on its own merits. Generalizations are not helpful. It is uncharted territory. And we are explorers, taking risks, not really knowing what to do, being opposed by others.

I think you have to go to a quiet place, close your eyes, and ask yourself, "Is this Right? Is this the best we can do? Do I know how to let go? When to let go? When to soldier-on?"

Sometimes you can also ask the questions "What would this person want?" the way Terri suggests. That only can happen when you are so close to the person in question that you have known their line of thinking and their emotional states and what kind of choices they would make based on their cognition and emotional base.

Anonymous said...

Great letter. I have to agree with Helen and Stacy about educating the public as a whole. My nephews were born at 26 weeks. Both of them have long term issues, one of the boys ended up having a trach and a feeding tube. When I was told that my son was going to be premature, and as early as 23 weeks, I knew the outcomes of preemies were more complicated than the general public is lead to believe. Our neo was great at giving us facts and the hospital's recommendation on heroic measures in regards to gestational age.

I am positive if I had not had personal experience with preemies born at 26 weeks, I would not have "heard" what the neo was saying. I remember clearly just saying over and over to my husband, "I don't want R and J's life." It makes me cry just remembering that. I felt awful saying and thinking that. But knowing about our nephews really helped us make the decision that if our baby was born before 25 weeks we would not elect for heroic measures. Our son was born at 28 weeks.

I recently read a great article in Newsweek about food allergies. I have read a ton of great articles about autism. The public has been given a lot of accurate information about food allergies and autism, but yet prematurity is still only given the "miracle" treatment.

That turned out a lot longer than I anticipated!

Thank you Stacy for a great blog. This blog has helped me accept the realities of prematurity.
Carrie

Long Term Listener said...

Just picking up on your point about tests that are routinely carried out in pregnancy Stacy. I too said - no thanks to them and my GP supported that. It wasn't until my pre-eclampsia kicked in through protein +++ in my urine ( a non- invasive test that I was happy to have since it did not interfere with my baby)that I was happy to let technology assist.
As women we are getting pulled away from listening to and knowing our bodies.

23wktwins'mommy said...

I have said it more than once but I'll say it again. I made my son a DNR. I had made my decision to end support if he did not respond to the steroids administered to him at 28 days of life. I would not consent to a PDA ligation until I was convinced he was improving respiratory wise. No need to put him through more pain if he was not going to make it respiratory wise. He was maxed out on the oscillator and doing poorly. He "turned the corner" so to speak so I did not have to go through with a decision I had made, and was agreed upon by my family and NICU team. So I do believe in ending support. I just don't think it is unconditional love not to resuscitate just because your child is born at 23 weeks gestation because you fear your child might have disabilities. I believe in informed consent and I believe parents do have the right to chose. Like I said, some parents are equipped to parent a child with special needs, and others aren't.

Helen Harrison said...

To 23wkstwins mommy who said
"I just don't think it is unconditional love not to resuscitate just because your child is born at 23 weeks gestation because you fear your child might have disabilities."

My own feeling is that unconditional love is involved both in decisions *to* resuscitate and in decisions *not* to resuscitate.

Unconditional love is what we all feel toward our children, no matter what.

What that love directs us to do in various circumstances is an individual matter, but fear of disabilities (generally involving a lifetime of medical suffering) seems (to me) to be a very good reason why an unconditionally loving parent might decide against putting their preemie through the highly painful and inherently damaging process of resuscitation and NICU treatment.

23wktwins'mommy said...

Yes, what Helen said probably is true.
People who have seen the suffering of a severely affected premature child may opt not to resuscitate out of unconditional love. I shouldn't have stated things the way I did. It's hard for me to understand parents making that choice because of how rewarding I feel my life is, and I guess because S&E are doing so well. There is no suffering at this time, and hopefully things continue this way. I just don't want parents who opted to resuscitate feel that they loved their child less because they chose to give them a shot rather than save them from NICU and possible long term pain. I can see how a family who had seen a suffering child not want that for their own. The tough part is there is a spectrum, and some children have *better* outcomes than others. Living with either decision can be difficult, I'm sure.

future of hope said...

Helen wrote:
Unconditional love is what we all feel toward our children, no matter what.


In a perfect world, I would agree with the above statement. This isn't a perfect world. Unconditional love is what we all SHOULD feel toward our children, but way to often our emotions come with strings attached. We love them, BUT they were supposed to go to college on a full scholarship. We love them, BUT they were supposed to be a "fill in your favorite sport here" star. We love them, BUT they were supposed to be class president. We love them, BUT they were supposed to walk..... True unconditional love can only be attained after we have cut those strings, after we have gotten rid of all of the buts.

I do agree that letting a suffering neonate go can be one of the highest forms of unconditional love. My son, like so many others here, did have a DNR in place at one time. But we have to be honest with ourselves at the same time. Are we making decisions out of love, or out of fear of the unknown?

Anonymous said...

"Are we making decisions out of love, or out of fear of the unknown?"

I don't understand what is wrong with the latter?

My child suffered a grade IV bilateral IVH, his future is unknown and I base my decision to discontinue services based on that...

I love my child either way but my decision is out of concern that his existance in this world would be marginal, and the stress of that would be too great for our family.

What is wrong with making a decision based on that?

Tammy said...

To resuscitate or not to resuscitate wasn’t an option at the hospital we went to in 2002. I was admitted into the hospital at 21 weeks with an incompetent cervix. I laid on my head for 3 weeks and was determined to do this until my due date. When I met the neonatologist, she gave it to me straight. I was told every premature birth is different. The issues that each baby faces and their outcomes vary. I was given the cold statistics. I was told that they resuscitate if the baby weighs at least 500 grams and 24 weeks gestation. They do comfort care otherwise. As I write this it seems as if my doctor was cold. But let me assure you she told me this while she looked me in the eyes and held my hand. She even cried with me. My son made it to 24 weeks and weighted 800 grams (1lb 12.9oz) and so our NICU experience began. We adverted some problems, went through others. I apologized to him for any pain he was going through but assured him that if he wanted to live that he would have to fight but promised him that I would be there with him every step of the way. I did feel guilty during the NICU for wanting him to live despite any future statistical outcome. I now know that there are no guarantees when it comes to the future. I don’t think doctors can list all possible outcomes but I think they should give you the facts. I wish premature births, especially micro-preemies cases were followed better. I definitely wish doctors (other specialists) beyond the NICU were more knowledgeable about prematurity. The public needs to know more. Now that my son is in school, teachers especially need to be informed. But one thing I am very grateful for is that I didn’t have to be the one to decide to resuscitate or not to resuscitate. I am also thankful that I have found ya’ll, it helps not being alone in the aftermath of premature birth.
-Tammy-

Helen Harrison said...

To future of hope:

I think all mothers (all mammals, perhaps) feel what I call unconditional love for their offspring. It is programmed into us, and very hard to override -- short of brain pathology or extreme environmental hardship of the "Sophie's Choice" variety.

It is our unconditional love that makes us get out of bed in the middle of the night when our child needs us, even though we are deeply in the midst of badly needed sleep. It is what makes us endure the many frustrations of parenthood without abandoning our difficult children (and all children are difficult).

The unconditional love I'm talking about is the impluse that would lead me to rescue my own children, preferentially, from a burning building.

It is, at least in my case, the impulse to want to hold my dying son rather than turn him over for what I consider to be medical torture and a lifetime of further medical suffering.

You talk about "fear of the unknown." But what I'm talking about is abhorence of the *known.* It is *known* that the pain and truama of resuscitation and neonatal therapies are damaging. It is *known* (or extremely predictable)what the aftermath of it all will be. I *did* fear this for him, and rightly so.

I would not personally choose to be kept alive this way. Neither would anyone in our family who is able to voice an opinion.

I always hoped that my mother, and now my husband and daughter, would have the unconditional love to protect me from the medical profession and whatever technological interventions the docs might find interesting and profitable, in the event I'm unable to give my own dissent to treatment.

My son couldn't and cannot tell us in words what he wanted, but I'm fairly certain he didn't want this care either. It would have been so much more merciful to let him die in relative peace at birth.

I must also emphasize, yet again, that this is not about fear of not having the "perfect" baby, or fear of not having a class president or star athelete.

To bring such terms and considerations into the discussion is to trivialize what is really at stake.

And to lump such parental aspirations in with "able to walk" is even further trivializing and insulting.

Not being able to walk -- having moderate to severe cerebral palsy, for example -- means a lifetime of medical ordeals -- the pain of the condition itself, botox, surgeries, complications from surgeries, incontinence with catheterization -- which leads to further gruesome complications, loss of early function as the child gets older, and on and on. Terri w/2 can give us a good description of what this has meant in the life of her daughter Erin.

To put "not being able to walk" in the same category with not being class president, in my view, shows a complete lack of perspective and understanding of what so many of our children are currently enduring, and of what lies ahead for so many newly "rescued" preemies.

terri w/2 said...

Future of Hope said: "But we have to be honest with ourselves at the same time. Are we making decisions out of love, or out of fear of the unknown?"

Our decision to discontinue life support, was the point I have felt closest to God in my life. It WAS a decision based on love and selflessness. This one pound, quarter ounce infant was suffering, and we needed, as her parents to make the decision to set OUR selfish "wanting her to live no matter what" notions aside and do what was in her best interest. It was in her best interest to stop the damn medical technology that was being inflicted on her.
I will never, ever waiver from believing that this decision was THE RIGHT ONE, and the neonatologist's decision to over-ride our decision was absolutely the WRONG one.

He was so incredibly wrong.

Tammy said...

These posts seem to reveal more than just unconditional love but a battle cry for doctors to be informed of the aftermath of prematurity. People need to know the true outcomes. The true stories of what happens after the NICU to help decide what should happen in the NICU. A book or collected data to inform the doctors, nurses, public etc. Just a thought.

23wktwins'mommy said...

I agree with Terri here. After watching our son deteriorate day after day on the Hi-Fi we had had enough. We made him a DNR, and said if he didn't improve over the weekend we were going to withdraw support and hold him in our arms while he passed away free of pain. It was the most gut wrentching horrible decision I have ever had to make, but it was the most selfless decision of my life. Their father and I both wanted our boy/girl twins so badly...how perfect, a boy and a girl. thgeir cribs had already been purchased and the pink/blue baby outfits were as perfect as could be. To tell our son it was ok to stop fighting still brings me to tears when I think about it. I made that decision not because I was afraid of the unknown, I knew what the future held somewhat in that I knew his brain would be affected, as would his sister's who was doing much better but was still a 23 weeker, but because he was suffering, because he was experiencing pain and he was not getting better. He was sedated, on an IV drip of pain meds, and being shaken by a machine that was trying to keep him alive. I am so grateful that the neonatologists and nurses were supportive and never once made us feel we were making the wrong choice, if anything, they agreed that this suffering should end. So we gave him the weekend, and family was up from Florida keeping vigil, hoping for a miracle. I finally got to hold him and told him how much I loved him and how much I wished he wasn't so sick. Over the previous week we had made a plan with the neonatologist that we would not increase his vent settings but slowly lower them every day (he was basically maxed out anyway) and if he failed, it was clear he was ready to be at peace. By Sunday he was weaned down to the conventional ventilator and was improving immensely. It was at that point that we decided he would determine where things went and I really felt as a mother that he would let us know.

I think the more that I reflect on this issue the more I can understand why parents opt not to resuscitate. I have to remember I am coming from a place where I have two 23 weekers who don't have severe disabilties that are apparent now. They are making really great progress and of course I am totally in love with them.
What I need to remember is that there are people who know of severely affected children who are in and out of the hospital undergoing painful surgeries. These parents are probably very afraid of prematurity and very fearful that their child will have a future like the child they are familiar with. I think it must be incredibly painful to make a decision not to resuscitate, just as it was painful for us to make a decision to end treatment.
What helped me come to this conclusion was a conversation I had today with an expectant mother who does home care. As a private duty nurse she sees many children who have significant medical issues. She is expecting and when talking about this very subject she admitted that before meeting Serena and Edwin (my twins) she would not have resuscitated at 23 weeks. This shocked me because she is a very committed, practicing Christian. Now she said things are confusing because she knows S&E very well and it is hard for her to think about not trying to save her child when she thinks of them, but yet she has seen other preemies who are much sicker and that scares her as well.
It is such an unfair decision and a lot has to do with the information you have, and your personal experiences. I think parents who opt to care for babies who will most likely have special needs are amazing, but I finally think I can understand why parents opt not to treat.
The most important thing is for neonatology to come to a place where our NICU is at. We need to have an open communication line and there needs to be honesty. Neonatologists should be helping families make these tough decisions, and if the family comes to a decision about ending care, the neonatologists should be supportive. It frightens me that we are not at this point nationwide and I wonder what the motivation for continuing to treat very sick babies is when the family has come to peace with the fact that their baby has had enough suffering.

buddhist mama said...

There have been some extremely important points in this blog---I can't list them all. I am grateful that this blog allows us to discuss issues that might not make it into the mainstream media/press.

One of the main audiences for this blog as I see it are people who know and can educate one of the 4 million women who give birth each year in this country, one third of whom are single mothers I just read. This is rather sobering if one considers that half a million deliveries each year are preterm. What if one third of those mothers are faced with raising a premature child without a partner. And what percentage of those have adequate medical insurance? It is those mothers and their children I am worried about. The mothers who lack the adequate care after they leave the hospital, or even those with jobs and insurance policies who have to go back to work at 3 months or six weeks. They may need to leave their premature baby with a day care facility that may not be equipped to handle the kind of OT, PT, and other therapies many preemies will need.

Those mothers need options and they need information before they deliver. I also think they do not need to hear that they lack unconditional love given the terribly difficult decisions they may be need to make, regardless of whether they choose to resuscitate or not.

We had a wonderful Neo at our bedside when I was a few days shy of delivering our 26 weeks twins who told us that the twins' prospects were far from certain AND that they could vary tremendously. He said something I have never forgotten: namely, a 26 weeker might develop more like a baby born at 27, 28 weeks or 25, 24 weeks. In other words, gestational date hardly dictates outcomes.

Why is this so important? It explains that we are all in a position of rolling the dice so to speak, hoping that our child will defy the odds. I say this because I have read here and elsewhere of preemies with much worse outcomes at 30 weeks than some born at 26 and so on.

In the end, we each make our decision and make our peace with that decision. But we should stop judging the decisions made by others especially if they differ with the ones we might have made. I respect Helen's and Stacy's views, and this forum has helped me make some decisions in my current pregnancy.

I did make a decision, with my husband, that we would not not seek rescucitation below 26 weeks. That may seem shocking to some. I would like to emphasize again that my choice is personal and comes out of my own experience as a Buddhist mother of twins who spent their first three months of life in a NICU It does not invalidate other choices out there, including those who decide to resuscitate at 23 weeks.

We discussed our choice with the doctor who had delivered my twins. She respected the decision and duly entered it into my medical records to lend it some weight. In the end we were spared the decision, but I only hope that I would have been allowed to make the decision without undue interference from the medical community.

It is unclear to me why my choice must threaten someone who has made a different choice, unless they believe things would be better if we all made the same choices. One can read Orwell's 1984 and see what that kind of world looks like.

I strongly feel we need more choices, and that respecting other's choices is part of what makes life so interesting.

Anonymous said...

I keep reading about all these DNR options that various parents were given and how you were actually brought into the decision process concerning medical interventions. Not so in our case. Nobody discussed whether to resuscitate or stop intervention despite grade 4 brain bleeds, kidney failure, NEC surgery, etc. etc. In fact, we could barely get any info from them...and they only gave it when we needed to sign a surgery permit, and this was at a big, university medical NICU.

Another point: After I had PROM, doctors decided not to stop or speed labor but to let "nature take its course," which resulted in major infection, yet after he was born, they intervened way past necessary and did everything BUT let nature take its course.

Years later, when we had an emergency with our formerly very preemie son and he had to return to that hospital for the first time since birth, the first thing one of the residents said to me after our harrowing drive to get there (and despite him being airlifted due to his critical condition and us not knowing if he was still alive or not when we reached the PICU)was that she was very concerned about his small size and weight, that he should be a lot bigger for his age!
Really! I wished I had told her..."Don't you KNOW that this very hospital is the place that forced this condition on him?"
She had not even looked at his records to see that he had been sick for the past two months and lost a lot of weight. And no, we chose NOT to have a feeding tube inserted, because everything that has ever been done to this child caused further complications, even the orthopedic surgery that was supposed to straighten his limbs.

After he gained a lot of weight back plus had a major growth spurt, he developed severe scoliosis and accompanying lung damage.. So when we took him back for a checkup, one doctor remarked about how bad the curvature had gotten in such a short time. What did they expect with a growth spurt in a child who has spastic quadriplegia?

Then, because he had a chronic digestive disturbance that we thought was caused by his new medicines, one ped doctor at this same medical center wanted to do extremely invasive tests to determine the cause! We finally solved the problem with Activia yogurt!

I am convinced that there really are doctors out there who...years after the NICU...are STILL experimenting on our preemies. So please be careful.

buddhist mama said...

I just read the abstracts for one of the studies that PE links to on her blog---the one about Resusucitation in the Gray Zone of Viability. I was surprised to see that 90% of the Neonatologists surveyed considered "resuscitation obligatory" at more than 25 weeks or at a birth weight >600 grams. As such, our decision not to resuscitate under 26 weeks could have been far more difficult that we expected even at a major teaching hospital.

Thankfully my husband and I were spared having to act on our decision, but I am writing if only to note that we arrived at our perspective after extended deliberation. It was made knowing that we have 26 week twins who may or may not need a lot of care at some point in their life.

Helen Harrison said...

To Buddhist Mama and Anonymous 3:29:

Many (most) neonatologists in the US give parents no real choices (but I do know of several wonderful exceptions who do!).

For the most part, however, even when the docs allow DNRs, it is usually after the "window of opportunity" for stopping treatment has effectively closed. The docs also commonly tell parents things like "your baby has had a severe brain bleed, but if we stop the vent, he may survive with even worse damage." Or "we just found PVL but it's too late to stop anything."

The end point is that even the most severely impaired preemies usually end up surviving, once they've been resuscitated -- no matter what the parents want, or what they doctors *claim* they want.

Since the neos totally frame the issues themselves, parents are usually unaware of when and how they might effectively or legitimately intervene to stop treatment.

Neos also misunderstand (or misrepresent) the law to parents and each to other -- characerizing as "illegal" choices that are, in fact, legal, appropriate, and ethical. It's all very passive-aggressive.

A good article on all this is "Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units" by Kristina Orfali in _Social Science and Medicine_2004;58:2009-2022.

I also doubt that the bias in favor of all-out treatment no matter what would exist in the US except for the strong financial incentives to neonatal units and hospitals.

As for "experimentation" later in life on preemies: What the doctors do at this point can also be "revenue driven." However, I would welcome some real, well-conducted experimentation on our older preemies to help the medical profession (and our families) get a better handle on the many problems that afflict our children later in life.

One good study would be to test "Activia" and other probiotics against the many horrible g.i. problems and high-tech drugs and interventions that so many preemies currently endure.

FWIW, my preemie has also been greatly helped by Activia.

To 23wktwins'mommy who was surprised that a committed, practicing Christian might not want resuscitation for her baby at 23 weeks:

I have worked with devout Christian clergymen, including 3 Catholic priests, who were all horrified at the thought of uniform resuscitation of extremely low birthweight preemies.

I don't think there is anything in Christianity (or unconditional maternal love for that matter) that mandates such resuscitation.

Jennifer said...

Hi Helen,

"Neos also misunderstand (or misrepresent) the law to parents and each to other -- characerizing as "illegal" choices that are, in fact, legal, appropriate, and ethical. It's all very passive-aggressive."

Can you elaborate on this? I'm under the impression that the Baby Doe laws prevent parents from making choices about resusitation if the preemie is not in a 'vegetative state'.

Helen Harrison said...

To Jennifer:

The Baby Doe Amendment to the child Abuse and Protection Act has never been challenged in a higher court, but if/when it is, it will probably be overturned as were the identical "Baby Doe Regulations" that preceeded it.

Neonatologists (selectively) invoke the Baby Doe Amendment to parents, but if the Amendment is taken literally (only a vegetative state allows for removal of the ventilator) then every neonatologist who has a baby die in his care is probably guilty of violating the law. For one thing, it is impossible, I'm told, to diagnose a premanent vegetative state in a newborn, particularly a preemie -- making the law essentially meaningless. The law also has no real penalties in place for violation, and is grossly out of keeping with all other law on this issue (with the exception of the very silly Born Alive Act-- but that's another story that may or may not be relevant here.)

If you send me your email address at Helen1144@aol.com, I will send you Kristina Orfali's article and you can research this issue further.

Anonymous said...

Dear Buddhist Mama,
I am from Massachusetts and delivered at a major teaching hospital in the city. I had a note in my chart not to resuscitate before 26 weeks. My husband and I quickly changed our minds when I was in the delivery room at 24.1 weeks. Our doctor kept reminding us of our previous request but we demanded our daughter be resuscitated. My point being that I do think your wishes could have been respected. I'm glad you weren't put in that position but I just wanted you to know that there are some courageous doctors that do put the needs and wants of the family above their own.

Dreaming again said...

Hi Stacy, it's me Pk from Pownce, just sending you my blog addy through commenting!

buddhist mama said...

Helen,
Would you mind sending me the pdf or other version of the Orfali article. Thank you so much in advance.

I can be reached at Kgutschow@williams.edu

To anonymous at 8:31.
Thank you for that encouraging story. I appreciate and respect the opportunity to make the choices as well as the variety of the choices made, including yours.

future of hope said...

Terri w/2 wrote:
I will never, ever waiver from believing that this decision was THE RIGHT ONE, and the neonatologist's decision to over-ride our decision was absolutely the WRONG one.

He was so incredibly wrong.


I 100% agree with you. The decision was morally and ethically yours. That a Neo over-rode you is unthinkable, and VERY, VERY wrong.

We all bring our own baggage to this discussion. To Helen Harrison : perhaps the addition of "too walk" could have come across as trivializing, but it wasn't meant to be. That was my biggest hurdle, letting go of walking - understanding that a wheelchair was life altering, not life ending. CP does mean a harder life, yes. Surgeries, Botox - been there, done that. Insurance denials by the 1000's, bad marraige, husband that is overwhelmed and actually jealous of his own kids - currently there. Confronting puberty in a total care pre-teen - staring it in the face. Personally though, all of that does NOT make my son the poster child of "those who should not have been saved". Would he have chosen this life over a "normal" one? OF COURSE NOT! Would he have chosen his current life over none at all? I'm fortunate in the fact that he can tell me. Yes, he would have. He has long been able to quote his favorite Dr. Suess line " So we'll go to the top of the toppest blue space, The Official Katroo Birthday Sounding-Off Place! Come on! Open your mouth and sound off at the sky! Shout loud at the top of your voice, "I AM I! ME! I AM I! And I may not know why but I know that I like it. Three Cheers! I AM I! " And that is where I come from. Everyone's opinions are shaped by their own experiences. What is right for one family can't work in the next. Life is not black and white, good outcome and bad outcome. It can't be simplified that way.

And while I hate to be cynical, I have worked with way to many abused kids over the years to believe that unconditional love is hardwired into mothers.

Helen Harrison said...

To future of hope who said:

"And while I hate to be cynical, I have worked with way to many abused kids over the years to believe that unconditional love is hardwired into mothers."

Having seen the same situations myself (many of them involving foster mothers, BTW) I agree with you that, as I mentioned in my prevous post, the hardwiring can be overriden by severe circumstances, and maternal brain damage/changes (sometimes drug related).

My husband has often, remarked, cynically (especially on airplanes), that the one thing he doesn't understand about child abuse is why there isn't more of it.

The reason, I think, is that mothers are hardwired *in the vast majority of cases and circumstances* not to give into frustrations involving (particularly) their genetic children -- in fact, not even to be seriously tempted by it.

And yes, my son also quotes the same Dr. Suess lines, among many others. It is cute, but does not change what was done to him nor does it change the suffering he continues to endure.

terri w/2 said...

23 week twins' said: "She is expecting and when talking about this very subject she admitted that before meeting Serena and Edwin (my twins) she would not have resuscitated at 23 weeks. This shocked me because she is a very committed, practicing Christian."

I found this to be a curious comment, 23 WTM. .what would being Christian have to do with not wanting to resuscitate? Are you meaning that she is staunchly pro-life? Often times, the pro-life and Christian lines blur, but no where does it say that YOU MUST RESUSCITATE no matter what in order to be a good Christian. If nature is allowed to take it's course in the comfort of a mother (or father's) loving arms, certainly nothing could be more Christian than that. Our hospital Chaplain (a Catholic nun) supported our decision to withdraw life support from our daughter completely! (We also were both raised Catholic). .The Catholic Church and no Christian faith that I know of, does not say you must torture someone to life.

Federal law and some cowboy neonatologists, however appear to think differently.

future of hope said...

Helen wrote:
And yes, my son also quotes the same Dr. Suess lines, among many others. It is cute, but does not change what was done to him nor does it change the suffering he continues to endure.


I can't begin to understand the path your life has taken, and in all fairness might have many of the same feelings if I felt, as you seem to, that Neonatolgy had "done this" to my son. The fact is that I give them credit for helping him, and giving him a fighting chance for as full of a life as he is capable of leading. I was not kept in the dark, nor given false hope about his long term prognosis. But at the same time it was never all doom and gloom. He was, and still is, a very hardy, healthy little guy.

Re : The quoting from Dr. Suess, while my son IS cute when he does it, I can find peace in the fact that he is not just parroting. He speaks his mind about everything, and just might be the most opinionated 10 year old on the planet.

Helen Harrison said...

To future of hope:

On the one hand, you imply that unconditional maternal love would/should accept any outcome involving a surviving child.

Then you cite qualities that, to you, make your son seem close to normal to justify his neonatal rescue, and, persumably, to justify your unconditional acceptance and love for him.

For example, you insist your son doesn't just parrot Dr. Suess' lines. (I mean, why would/should that matter one way or the other?)

Your life and your son's life as you have described them on this blog sound difficult and full of pain and discord. I can understand that you may want to emphasize the positive as you search for meaning in the struggles you confront. And I wish you all the best in these struggles.

In my own family, there are bright sides and positives, too. We are grateful for every respite from pain and every consolation we get. But we would not use these "positives" as pretexts to urge others to take aggressive measures with similar babies or to congratulate our son's neonatologists.

We don't need to insist that what was done in our son's life was "right" in order to love him and go forward with our lives.

We also try not to make a virtue of necessity -- our son is here, and we are going to do the best we can for him under some very difficult circumstances.

We are not going to pretend, however, that Ed's survival was, on balance, good for him or for us. We are not going to suggest that others who would avoid this life for themselves and their children are somehow immoral or unfeeling or "against" our child.

Our love for our son does not require us to insult others who might (rationally and lovingly) choose not to put their child through what our son has endured, nor does it require us to celebrate neonatology, which we feel is creating impossibly painful situations for so many families and children.

Helen Harrison said...

To terri w/2 and Jennifer about the Baby Doe "law":

I just found a good article on the legal aspects of the Baby Doe law, here referred to as the Child Abuse Amendments (CAA) of 1984:

A quote:

"Some commentators believe that the CAA and these regulations limit a parent's right to decide on their child's medical treatment in that parents have an affirmative obligation to show '...that the child was comatose, terminally ill, or that treatment would be futile or virtually futile." Others conclude that the regulations merely stipulate that, for a state to qualify for federal child abuse protections grants, the state's child protection agency must establish procedures for reporting and investigating claims of medical neglect that meet the definition of the regulations.

A fair reading of the language of the regulation is the the latter analysis is more accurate. The regulations contain no sanctions against doctors for violating the law or regulations; and they attach no direct liability to hospitals under the federal standards. In fact, Courts have affirmed that there is no private right of action for individuals or groups to take legal action against a healthcare provider under the CAA because it only 'authorizes states which receive federal grants for child abuse and neglect to bring legal action through child protective services agencies to prevent the medical neglect of disabled infants.' Furthermore, there is no documentation available from public records that shows any physician has ever been prosecuted, any hospital held medically liable, or any state has ever been denied federal funding for alledged violations of the CAA or the regulations promulgated under that act."

The Legal Landscape at the Threshold of Viability for Extremely Premature Infants
Irene Hurst, PhD, RN

I have this article in manuscript form but think it was published in 2005 or 2006.

Of course, more important than what the law actually says/means is what those in power in the DR and NICU(the neos) think it says or want it to say.

23wktwins'mommy said...

I think, and correct me if I'm wrong, future of hope made the distinction between parroting and actually understanding the lines from Dr. Seuss because she used the example to articulate that her son would have chosen his life over no life at all. She didn't say it to "make [her] son seem close to normal."

Helen Harrison said...

To 23wtm:

I think she was using "parroting" to contrast what she feels our son does when he recites these words by Dr. Seuss(though he, too, has an understanding of what the lines mean), and what her son does. She is saying that her son understands these words and is making a meaningful quality of life statement when he recites them.

Perhaps. Though, as with my son, he may say, or indicate, other far less positive feelings about his life at other times -- eg. screaming in pain, begging the doctors to stop.

I think this all goes back to the point made by C&V:

"Likewise, our preemies, some of them, have very painful lives. We may give meaning to their lives, such as "It is the will of God," or "She is a ray of sunshine to others. Her smile shows she is in there, that she is happy." To me, that only means that WE, the onlookers, have found meaning in these peoples' lives--not necessarily that THEY, the victims of being trapped in these failing bodies and minds, can find meaning in their lives."

future of hope said...

Okay, I am taking a deep breath and backing off here. 23wktwin'sMommy - yes, that was exactly what I was trying to point out in regards to my Son's attitude towards his life.

Helen - I was in no way attempting to make a comparison between my son and yours one way or the other, I was answering your comment about "cute" recitation, which to me does bring to mind repeating without understanding. I am also not attempting to say that I feel that all preemies should be resucitated, nor that treatment should continue at all costs. The ONLY correct decision is the one made privately, in the hearts and minds of the parents involved, ideally in partnership with the medical staff.

Helen wrote: Your life and your son's life as you have described them on this blog sound difficult and full of pain and discord. I can understand that you may want to emphasize the positive as you search for meaning in the struggles you confront. And I wish you all the best in these struggles.

I am sorry if I have given such an inaccurate portryal. Yes, our lives are often difficult, but really who's isn't? I am not "searching for meaning", I am living. I do not feel compelled to " cite qualities that, to you, make your son seem close to normal to justify his neonatal rescue, and, persumably, to justify your unconditional acceptance and love for him". I hate the word "normal" and I am not even sure how to define it, but no matter what definition that you choose - my child will NEVER fit it. So? I don't have to justify ANYTHING. Nor do I feel that those that have chosen differently have anything that they need to justify. If your purpose is to see that parents are properly educated on the causes and effects of prematurity, then somewhere along the way you are going to have to realize that not everyone is going to make the "rational" decision that you feel should be made. All of the information is a good thing. The more informed a prospective parent can be, the better. But not everyone is going to react to the information in the same way.

Helen Harrison said...

To future of hope who said:

"If your purpose is to see that parents are properly educated on the causes and effects of prematurity, then somewhere along the way you are going to have to realize that not everyone is going to make the "rational" decision that you feel should be made. All of the information is a good thing. The more informed a prospective parent can be, the better. But not everyone is going to react to the information in the same way.
***


That's fine with me! I'm not asking that anyone make "rational" decisions, much less the same decisions I would make.

I have, for example, no problem at all with "anonymous 8:31" who changed the directives on her chart when she was in labor from no resuscitation at 26 weeks to request resuscitation at 24 weeks. This was an honest decision, and one she is *not* using as a club to bully or intimidate others. Rather, she used her experience to give guidance to Buddhist Mama whose views are different from hers.

This is the kind of tolerance and understanding that I advocate and encourage.

What *isn't* fine is the implication that anyone whose decision is different from yours is:

1)deficient in maternal love
2)and/or being less than honest

as well as, from 23wtm:

3) unChristian or irreligous

23wktwins'mommy said...

Helen you completely misunderstood my description of the nurse. I was surprised because I assumed she was 100% pro-life because of how dedicated she is to her church, the comments she has said in the past about her relationship with God and her commitment to Christianity. I NEVER said it was unChristian like for her to not resuscitate. I just happen to know her devote religious preference (for which I DO NOT share by the way) and it surprised me that even she went beyond what her religion says and was sticking to what she knew through her medical profession.
You are always reading comments and then reposting them for a response. You should have read mine more closely because you 100% misread it.

future of hope said...

Helen wrote:
What *isn't* fine is the implication that anyone whose decision is different from yours is:

1)deficient in maternal love
2)and/or being less than honest

You have taken my words and thoughts and totally twisted them to fit *your idea* of what I said. So be it, there is no point to an ongoing debate. We both agree that knowledge is power, and that education and ongoing support are vital, no matter what path a person takes. Let's leave it at that.

Chris and Vic said...

When I read all the comments, it gives me a "solemn" feeling. I have read such give-and-take before on this blog and on others, such as Neonatal Doc's, and have regarded it as "spirited debate". This time, however, I see and hear and feel that we are asking one another for tolerance.

We are all the mothers of preemies. Some of us seem to see the past and the future with clarity; others of us have not had the chance to analyze it so thoroughly yet; others of us see "as through a glass, darkly".
And we are asking one another for tolerance, each for her own perspective. It is solemn to me, even spiritual. Please, let us give one another this great gift.

Buddhist Mama, I'm so glad to see you posting again. I've missed your posts. Your point about teen moms who need support when they take their preemies home . . . If you only could see what I see---the mothers need a depth and breadth of groundwork before they can even be educated about the finer points that we discuss here. The ones I meet (and that is mostly who my hospital serves, in "inner city" Milwaukee), could not relate at all to these issues. They need help growing up, valuing education, valuing good nutrition, learning how to live in poverty in a dignified manner (how to prioritize their money-spending on things that are really necessary/important), learning how to deal with their minority position without excessive anger, without excessive feelings of entitlement . . .

They need to cultivate extreme wariness, since they are not safe in their neighborhoods. They need to learn who to trust, and where to go for help, where to go to be safe. It is huge, what they need to have establshed as groundwork, before they can get to a discussion such as we are having here.

You are so right to be worried about them.

Chris and Vic

terri w/2 said...

23 WTM said: I was surprised because I assumed she was 100% pro-life because of how dedicated she is to her church. .

Thanks for the clarification, 23 WTM. That's what I had questioned also. . .someone who is Catholic or of another Christian faith does not necessarily have to share the extremist viewpoints of the pro-life organization. The pro-life people are the ones behind the Baby Doe laws of the '80s that removed the rights from parents like me to make decisions about our own children's medical treatment.

The Catholic church and other Christian faiths are not as extreme as the pro-life viewpoints. In fact, the Catholic Church is quite lenient - almost liberal in it's support of foregoing painful, artificial life support, of which NICU care for our little ones would most certainly be considered.

Helen Harrison said...

According to 23wtm I have:

"completely misunderstood" and "100% misread" her statements

According to future of hope I have:

"totally twisted" her words

Giving them the benefit of the doubt, I have very carefully re-read the entire exchange.

What I found was that others took their words the way I did. I will leave it to the rest of you to judge whether we have all "misunderstood."

I am glad, however, that we all seem to be in agreement on the importance of information and support as we cope with our many current challenges and those that lie ahead. I hope that support can include tolerance and understanding of differing choices.

buddhist mama said...

To C& V.

Thanks for the shout. I'm surfacing after a bit of depression, moving households roughly 4 times in four months during our sabbatical, over-work, and not enough childcare.

Thanks for your perspectives on single mothers. I also want to second Helen's point that our school system is over-challenged already and that the state seems to show little interest in subsidizing long term follow-up and care of infants who spend time in the NICU (preemies and full terms). In other words, we clearly differ from Europe, where there is less of a pro-life lobby and more real "pro-life" policies at the government level, including subsidized health care, better regulation of Artificial Reproductive Technologies, and better maternity benefits (I think Sweden gives at least one maybe two parents a year off work fully paid).

The statistic that one third of all babies born in the US were born to single mothers comes from the National Vital Statistics report of 2005 and refers to data from 2003. It is cited in Liza Mundy'a Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World---a FASCINATING read. Incidentally, not all those those single mothers are teens or working class. Many are part of the growing Single Mothers By Choice movement, older women having children using New Reproductive Technologies, often highly unregulated, in which doctors are implanting far more embryos than would be allowed in Europe for instance. It is these higher order multiples---often born premature---and their single moms that I am also worried about.

Interestingly, it is doctors---in this case fertility doctors hoping to boost the success rates of their clinics and make more money int the process---who are at fault and who don't have to face the long term consequences of their actions in the way the parent does....

23wktwins'mommy said...

I wouldn't lie about what my words meant. That very comment is about how I am coming to a place where I understand WHY people opt NOT to resuscitate based upon their experiences...in this nurses case, it came from her experience with children with medical and special needs. If you knew her you would understand my point...she is the type of person you would think would be completely pro-life.
My point was that in her telling me that she never thought she would resuscitate at 23 weeks helped me understand that people make choices based on their experiences and on what they know. I am coming from a place where I am the mother of 2 amazing 23 weekers who are doing very well, and previous to meeting them, the nurse was making her decision based upon the suffering she had seen in her medical profession. I explicitly stated that I can see how people who have seen severely affected preemies would not want that for their children.

I can't see how you or anyone else interpreted that comment to mean I thought people who chose not to resuscitate are unChristian like or irreligious. But don't ever think I would deny my opinions. If I thought it was irreligious or unChristian like to not resuscitate I would say so. I have no issue stating my opinions whatsoever.

Anonymous said...

Hi My first time seeing your blog.
I hate my NICU doc
He is a bastard