preemie experiment?? viability through the eyes of a nicu nurse

this is a very interesting article..

http://thepreemieexperiment.blogspot.com/2009/10/viability-through-eyes-of- nicu-nurse.html

i know we,( moms and dads to preemies) have our opinions,,, whats yours??


this article really brought on alot of emotions for me and sparked a good conversation with DH.. WHat he said made me fall in love all over again :)
we believe a life is a life.. precious..

Edited May 5, 2011 at 2:28 am

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The writing does not quite convey all the "gray" areas of microprematurity. This article discusses the same subject, the border of viability, but goes more into what is possible and not possible. (it is quite an old article now so the weeks have changed a little bit..)

http://www.nytimes.com/1995/07/09/magazine/does-anyone-here-think-tnis-baby -can-live.html

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I read the nurse’s post when it was first written. I thought then, and I think now, that her piece was well reasoned and well written. I feel her concern about appropriate treatment for those babies on the edge of viability is #1 well placed, and #2 evidence of what a caring person she is. I would want a competent person as my child’s nurse, of course, but not only that. A nurse such as this, who cares about my child’s future, is a nurse who sees my baby as a real person, not just some problem to be managed for 8 to 12 hours before punching out. This nurse is obviously not just doing the job for the paycheck.

@Florins mom – thanks for posting your link. I found it riveting. It was interesting to read about doctors who know they’re playing God, but are not fully comfortable in the role.

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Very interesting article.
This topic has been on my mind since my 1st weeks in the NICU with my son.
We were not offered a choice, yet our son was on the edge- in age but especially weight and physical development. A couple of weeks into our journey with him, a nurse sat next to me at bedside and chatted about how sad it was that "medicine" was keeping these early kids alive. She told me that most would go on to be bed ridden, completely dependent and that the marriages more likely end in divorce. As my son's belly was swollen black from a perforated intestine and he was fighting for his life next to me- I couldn't help wondering if this was the seemingly friendly chat it appeared to be- or a word of warning.
If you asked me today, knowing all that I know now ( the brilliant personality of my boy, his sweet, sweet love and generous smile ) "Would you choose to do all that is available to prolong his life?" I doubt I would consent. Yet without knowledge and understanding that I have now- I would have not changed a thing.
I feel like the answer is somewhere in between. Perhaps provide assistance and see how he responds. This was always my confidence in the darkest days- whatever intervention he was offered- he used it to great aid and took it to move forward, somehow.
But it was all a gamble. Our story could have been so very, very different.
And this is where hindsight is 20/20- without it- how can you justify what is worth suffering through and what isn't?

In many ways I feel like this is a cart before the horse conversation. In America, I think we have not come to an agreement on when life begins. Because whenever that is- each fetus/ child/ baby.... becomes an individual. Our constitution is built on individual rights, so when one becomes a "person" - an individual- one should get the same rights as the next individual.

At birth our son's skin would have come off in your hands, he was black and blue- just from the birth canal- he was so bad for so long that he was assigned one nurse. His primary could have easily written that letter. She shared with us once that his NICU stay had changed her coarse in nursing (for the better, she just graduated with her NNP degree) yet that could have easily been flipped around.
We just got back from Parent's Day at our son's school, where he proudly showed off.
My husband and I talked about what a long, long journey- many joys and many unbearable hurts- to get here. I would do it all again to give him this place in life. But that does not change the fact that it was a gamble- and many lives were called upon.
I wish I knew the right answer. My heart is so heavy for those parents of micropreemies and troubled pregnancies on the edge of viability.

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Florins mom.. wow that was an intense article.. thank you for sharing ,, i couldnt help but cry the whole time...

z1z2.. i agree with what you say about the nurse.. and ive been researching alot about viability,, i have never been in that position as a parent or caregiver to have to make that decision.. My emotions have the best of me to where i feel like every life deserves a chance to live... but if i were to think about it and imagine myself in that position i think that i would have to let the baby make its decision..

my heart aches for any one who has been at the edge of viability

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This is poignant to me for a few reasons. My daughter was not a micro preemie, but had surgical NEC at 5 days old and was expected to die. The pain and suffering she went through was terrible. During her critical and unstable period many head ultra sounds were done which looked normal. She survived and was in the nicu for 3 months. 2 days before discharge she had an abnormal head ultra sound and mri and was declared neurologicaly devastated. Huge cysts all over her brain. If they had seen it when she was critical we'd have been told to withdraw care. She was given the worst prognosis, and we took her home. I'm not sure what we would have done given the choice. The reality is that she can already do things they said shed never do. But the reality is also that she has cp, is blind and has pain daily. I think about what will happen to her when we die. That is probably the scariest thing.

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re: "how can you justify what is worth suffering through and what isn't?"
You summed up the problem very concisely. Everyone - even one preemie's mom and dad - can have different opinions on what is worth it. As long as that is the case, a uniform approach to handling edge of viability cases won't be universally accepted. I feel for those parents (and doctors and nurses) who have to make the decisions.

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I was just wondering if any of you have a 21-22 weeker that was under 500 grams ans has survived?

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Very good posts. I think z1z2 summed up my thoughts pretty much.

Thank you for the article Florinsmom.

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well, i guess im the minority here, again. i just look at my son, who is happy! he has limitations sure, but we all do, some more some less. and guess what, this is the only life he has known, this is HIS normal.
see, i come from a back ground where i had alot of exposure to handicapped and disabled people. i think alot of people look at someone and say "oh, there quality of life is so terrible" because they think it would be terrible for themselves! my dear friends brother is 35, he has spinabifida, he is mute, and profoundlly disabled in a wheel chair, he wears a diaper. his mother chose to do all she could to save him. through hydo, therough surguries. and today he is HAPPY! he teaches others that life isnt all about ME ME ME. Life is about helping others, understanding others limitations, and our own, and giving and recieving love. life isnt about how easy will it be to take a vacation with a profoundly disabled kid. sure, my friend mary with her 14 year old son who has micrcephally so severe that he is developmentally a 0-3 month old could have let him die, but she didnt. and her other children love him as much as she does, so he will always be cared for.
now, im not saying that we have to go to the very edge of all medical technology for each and every child, that we have to injure a child over and over just to give the parents more time with a child who is just never going home. but im not saying that thatisnt reasonable in some cases either. we did go to heroic measures with my son. and im glad we did. but it ultimately be up to the parent and the doctors to come togeather on an individual basis and decide what is best. sometimes heroics are best, other times letting go is best. but it has to be on an individual basis. it just can not be a broad viability cut-off , sorry no help under xxx grams or no help before xx weeks., type of thing. i personally dont like the article. i get her point, but i dont like how it comes across. because my 26 week, 1 llb son who needed dialasys and all sorts of other things is proof that life is valuable, and for US , heroics was the right choice.

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Very interesting articles and posts. I just wanted to add my two cents since I am a mommy that had to decide life or death for my first 24 weeker. It was a terrifying and horrific decision to make when you have NICU docs telling you all the terrible possibilities that can happen if a 24 weeker survives (CP, blind, deaf, mental retardation were the big four) - however, me and my husband decided we wanted to do everything possible for our son. He was born 1 lb 2 oz and they had to resusitate him 5 times. After 14 hours we made the heartbreaking decision to stop any more efforts to resusitate and he was placed in my arms and died. A couple of years later I gave birth to 24 weeker twins - 1lb 2 oz and 1 lb 4 oz- and they both survived and are doing great (they will be 1 yr adjusted in a week). HOwever, when my water broke at 23 weeks due to PROM and the NICU docs asked me what I wanted to do if I delivered, I said do not resusitatae if the babies were born under 24 weeks. They were born 24 weeks on the dot- I can't imagine what wold have happened had they been born one day earlier. I think people's opinion on this topic depends on the experiences they have had. Either way, it is a good discussion.

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This is an extremely personal and deeply emotional topic. Looking at it as "black or white" just doesn't cover it. Until you walk in the shoes, there is no telling what you would truly do. Aron Ralston was able to cut his own arm off to save his life. Innocent people have admitted to murder under extreme pressure. Things happen in our lives and sometimes we think "I never knew I would feel This way". The NICU experience has been compared to Post Traumatic Stress Disorder (http://www.nytimes.com/2009/08/25/health/25trau.html?pagewanted=1&em).

I'm a micro-preemie mommy to identical twins. I was dilated (to 3, I believe) at 22w/6d and could not be admitted to the hospital until the next day. (I cry now just thinking about it.) My sons were born at 24w/0d. For twin, white boys (the weakest multiple) survival was not likely before 24 weeks. Porter - 1lb 10oz (750 grams), Jaxon 1lb 11oz (780 grams). If you're wondering what that looks like, that's my husbands wedding band on Jaxon's leg in the pic above.

I never got to hear my sons cry when they were born. They were dark, almost black, and were bruised black, blue, red and yellow. Their eyes were closed and they had tubes coming out of them from everywhere. You could see their ribs and their chests caved in every time they struggled to take a breath. Their skin was so fragile that touching them was very limited. They laid in an isolate surrounded by medical equipment and staff. I was in such denial, I thought they were perfect and were going to pull through. I had no idea what the journey ahead would be like.

Porter went from my arms into Gods after only 19hrs, 26min. Jaxon fought for his life for 125 days in NICU. Three surgery's, endless diagnosis, countless medications, blood transfusions, middle of the night phone calls, constant alarms sounding, veins so tiny and thin they kept blowing out, and on and on. There were times we wondered if we were doing the right thing, putting Jaxon through all this. His tiny body, no bigger than the palm of my husbands hand, laying there. His silent cries, mouth stretching back in a scream, but nothing could be heard. The sound of constant brady alarms and people running to save him, yet again.

And there, every day, were the people who made all this possible. The doctors, nurses, HUC's, respirator technicians, x-ray tech's, lab, pharmacists, dietitians, therapists, lactation consultants, social workers, cleaning staff . . . There were the hero's that made all this possible. I can't imagine walking the fine line of life & death, daily. Clearly, it had taken it's toll on some staff. They're only human. Having opinions, religious beliefs, yet bound to keep them silent.

No, I don't want to walk in their shoes and I'm sure they don't ever want to be in ours (preemie parents). I understand a reason for needing a cutoff line for viability. I didn't like being on that line and I'm sure it's just as difficult being the medical staff that decides. I am ever so grateful to all the families that came before us that made it possible for any of what we have available to us today. Again, I don't believe in black or white. If only the 23week mark could be used as a guide, coupled in with experience, humanism and the parents wishes. We have all read about preemies born days/weeks, before/after ours, bigger/smaller, have survived/we have lost. I don't think there is a right answer. Science can tell us week-by-week baby development, but it can't replace everything our baby's need to survive.

For us, was it a difference of 30 grams, 1oz, that determined life and death? We'll never know and that tears me up. Our personal journey has been so painful and life changing that I would never want to judge, condemn or condone, one for their decision. I think it's important to consider both sides and then pray. Only God has all the answers.

I give thanks to the brave people who take the time to share their view points in hopes of enlightening, educating, inspiring, changing a life. It takes courage to put yourself out there. I know we can become so emotionally vested we can be blinded.

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The NYT article is fantastic. Where the writer states, "Yet with every second his heart continued to beat, he was exceeding his life expectancy" is both so apt and horrifying and true. With my twins, (25 weekers, 850g, 835g respectively), I am now likely to forget how they continue to live beyond the expectations for them. But it was certainly true.

Unfortunately no organism comes with a do-not-save sticker (except maybe mosquitoes?) and no one can know ever. My son was born second, smaller and male, a kiss of death for a micropreemie. He was on an oscillating vent for days too. I remember being told that his chances were weaker and I can remember standing by his isolette and thinking, "I should not learn to love you yet." Yet he was the one without any IVHs, who learned to eat, who came off the vent successfully, who learned to walk and talk and talk and talk, and it was my daughter who has mild CP, a trache and a g-tube (though she too walks and signs and plays and is pretty wonderful. I bet she will read before he does too).

You never know.

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I wish more people would read this. I agree with the nurse and feel the exact same way. I think it does a disservice with the story of the 21 week girl who lived [a baby that we are not really sure was a 21 weeker] being so widely known. People read about that girl and think that the doctors let their baby who was born at the same age die without help. They don't realize what trying to save such a baby entails and if [and this is a big if] their baby lives it will most likely be so disabled that it is a vegetable. I understand when it is your baby none of this matters and you just want it to be helped, but unfortunately in such matters we have to take everything in consideration and realize that trying to save such premature babies may not be the best decision. All you need to do is look at all the 24-26 weekers who end up dying or having disablities from being premature and realize that at the current time [and I really think never - unless they can make external wombs] 21 weekers and before will not be able to be saved.

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wow.i guess i am the only mom here who tinks life with a disability is far better than death. my son has some serious issues, he came home with almost no white matter, he has cortical vision impairment, he is 1 yearold and cant roll over, but he is HAPPY! his life brings us joy, he brings joy to so so so many people, and he is human, and deserving of love no matter how disabled he is! i feel it is very callous for people to say that a baby shouldnt be saved because they will be disabled. it breaks my heart to hear people say that. disabled people can be, and are contributing memebers of society. they deserve dignity and respect, they teach patience and love. i guess im the only one who feels that way. i haves held death in my arms 2x. even if zimra were in a semi-conscious state, it would still be better than death. he feels our love, and we feel his love.
now, not every baby is going to make it. not all babies can endure. but many do! there are different circumstances for EVERY baby. for some people letting their baby go to sleep after a vey long battle with bpd and pulmonary hypertension is the right thing for their baby. for others dialysis on a 1 lb 6 weeker is the right thing. for some people intubating a 22 weeker with a grade 4 bleed is the right thing, for others it isnt. but the choice should be made only by the meeting of minds between the parents and doctor. NOT by a cutoff date, NOT by the doctors refusal to help because he doesnt think the baby will do well. NOT because the baby might be disabled. do you know that their are people WAITING to adopt special needs children. out friends in front royal are 1 such family. they were in the works to adopt a trisomy 13 baby. would he die from it? yes. but his birth mother chose not to let him die ot kill him in the womb, so this baby has experienced love and care for how ever long he had.
my friend here in wv adopted a 28 weeker drug baby, more the size of a 24 weeker with massive bleeds and a whole host of issues. the doctor didnt shunt her or give her the best care possible because she was in his words "a throw away who would be retarded anyway". this sickens me.
i do not like the article, and i donr care for some people s tone and attitude on this thread. it just sounds so very cold. are you saying you would rather your child be dead?

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It's not just about disability versus death. It's mostly about the question of when is the right time to say "no more." The answer is not always black and white and not everyone (doctors, parents, etc.) is going to agree.

I write this in tears, as this question is affecting my life right now. Not with my preemies, but for my 30 year old sister in law. You see, the question of medical intervention does not just affect micropreemies. My sil is lying in ICU and up until last week, was waiting for a lung transplant. She was removed from the list because she has been on the ventilator for too long and was deemed "too weak." She has been in the ICU for almost a month and several times the doctors had recommended that life support be removed. Each time, her parents (who are her power of attorney as she is unmarried) have had to wrestle with the choice to keep her alive. They struggle with the questions "Did we do enough? Will she get better? Are there other doctors we can consult with?" And they also have been bombarded with "miracle" stories from other patients and families, giving them glimmers of hope that something else can be done. Meanwhile, she lays in ICU, her body functions, largely because of the help of the machines. Right now, the situation looks bleak, and I think my in-laws have to face the inevitable decision.

The reality is that the price of technology is more ambiguity about when life begins and ends. We have the technology to sustain life for the critically ill and micropreemies, but when does life support become just prolonging death? There is no right answer, as I have learned the past month.

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Re: "It's not just about disability versus death. It's mostly about the question of when is the right time to say "no more." The answer is not always black and white and not everyone (doctors, parents, etc.) is going to agree."
So very true!!


re: "The reality is that the price of technology is more ambiguity about when life begins and ends. We have the technology to sustain life for the critically ill and micropreemies, but when does life support become just prolonging death? There is no right answer, as I have learned the past month."
So very true again!

I am sorry that you family is going through such a time now.

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i dont feel that babies shouldnt be saved at the point of viability because of possibility of disability but the pain and suffering they must go through. i didnt like what the nurse had to say -- i feel like it is up to the parents,, how they feel and what they can handle.. nursed have to take care of them in the nicu but parents will take care of them for life.. parents should have the last say

the NYT article was the one that really got to me.. and brought out a lot of emotions and though.. what if i were in that position..
i feel that the parents in that article made the best decision for their situation for themselves.

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im glad you posted, i was feeling like i was the only person here who didnt like the article! that woman has seen lots of sick babies, sure, but she doesnt have to take them home...she doesnt have to care for them, so her perspective is not the perspective of a mother who would love her child unconditionally. so many people think death is preferable over disability! how sad! look what they are missing!
the question about when life begins is simple, its conception and any medical doctor will tell you that, anyone with a shred of interest in biology will have to admit it. and thats not a religious fanatic view, its just science. so are we saying a 22 weeker isnt really alive? how insane.
the point is, there cant be a cut off, every baby every situation is different. what is right for one family wont be right for the next. its not about how much suffering and pain WE will go through, its the baby!
an aquaintance of mine had a 4 yearold with a brain tumor. i met her online. her boy went through very rough painful devastating treatments and surguries to save his life, and he will never be the boy he was. should she have just said, oh well, this will be too much , let him die?
i think it boils down to people not valuing life. they seem to think that if someone is different or disabled or in need of alot of care, that they are somehow less human.

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re: " think it boils down to people not valuing life. they seem to think that if someone is different or disabled or in need of alot of care, that they are somehow less human."

If you mean society in general, I agree with you. If you mean others on this post who seem to have a different view than yours, that is not fair. Preemie parents, just by doing their time in the NICU, have proven they value life. We have each put ourselves into debt paying for care that "should" have cost a fraction of what our final bills will ultimately be. Some of us are still feeling the financial impacts years after the birth of our children. Why would we do that, knowing that EVERY ONE of the babies/children represented here on this board is at risk of disabilities? Yet none of us has given up. None of us abandoned our babies at the hospital. None of us has hidden away children who may be "different". Each one of us could have done those things, if we truly felt that a "different or disabled" child was a horrible thing. Instead, we are all playing the hands we were dealt.

You are missing much of the point here. People are not really afraid of disabilities, even if their child ends up disabled. They won’t be thrilled, but they will accept and adapt and love their child no matter what.

The real point here is: how do we know when treatment is too painful, and the baby will end up dying anyway?? I don’t know if there should be a cutoff by calendar, because dates can wrong, but PHYSICALLY (from Mother Nature), there is a cutoff somewhere in there. We simply don’t have the technology (yet) to treat many edge of viability babies. The gentlest ventilators that currently exist can rip out tissue paper thin lungs. Simply touching a baby can cause a bleed. Who is even thinking disability at that point? It is much more basic and fundamental than that. We would not blow out a dog’s lungs, yet it is OK to do that to an infant? Edge of life care, no matter the age of the patient, can be TORTURE. At what point is it too much to ask the patient to go on? Many relatives choose to not continue care because they don't want to put the patient through that, not because they are afraid of CP or blindness. Disabilities are a risk we took on when we agreed to be parents. Sanctioning torture is not. Don’t confuse the two.

While I think any final decision should be up to the relatives/parents, doctors and nurses need to be involved. They can often see the physical signs that mean things are too much for the patient, signs that the family, for obvious reasons, can not.

Ultimately, all of us posting have all said that the parents should have the final say. No one has said that the nursing staff or doctors should. I could say, let’s agree to disagree, but I don’t think anyone is disagreeing – at least not once we are all talking about the same issue.

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Im not sure the majority of the readers understood her article, which I totally agree with at this point. I do not believe we should attempt to resuscitate 21 week preemies, which is what she is saying. She states that she received a lot of hate mail over this issue, which isnt really fair. She uses a very good term 'rational care.' Is it rational care to try to ventilate a baby with lungs that have the consistency of cobwebs or skin that cant hold an IV because its so delicate? Probably not. When it comes to babies born at 22-23 weeks I think she is saying that parents need to be more informed on what the baby is going to suffer through, and understand that the outcome probably is not going to be a 100% healthy child so they can make an informed decision. Extreme premature babies are people too, and they feel pain, loneliness, illness, and everything else we do. I cant imagine having an IV removed and my bone being exposed from it. Ouch. Sometimes a peaceful death shortly after birth is not the worst option; that is what she is trying to say, and I agree.

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