Monday, December 15, 2008

Extreme prematurity

I've been musing about what I would do if I were to go into preterm labor. The answer is obvious if the baby were 30 weeks: go to a hospital with a good NICU. My own cutoff for an out-of-hospital birth would be around 36-37 weeks, depending on the particular situation, access to oxygen and a midwife skilled at recognizing signs of respiratory distress or other prematurity-related complications.

But what about 28 weeks? 26? 24? 22? At what point would I allow the baby to pass on peacefully, rather than attempting heroic efforts at resuscitation with a small chance of survival and high likelihood of major disabilities if the baby were to live? My own gray area is between 24-28 weeks. By time a baby hits 26 weeks gestation, survival rates are between 80-90%, and about 15% of those surviving babies will have major disabilities as a result of prematurity. I think this would be the earliest point at which I would consider intervening.

General estimates of survival for live born infants who receive neonatal intensive care in the USA in the late 1990's are:

Completed Weeks of Gestation at Birth
(Using last menstrual period)
21 weeks and less
22 weeks 0-10%*
23 weeks 10-40%
24 weeks 40-70%
25 weeks 50-80%
26 weeks 80-90%
27 weeks >90%
30 weeks >95%
34 weeks >98%
*Most babies at 22 weeks are not resuscitated because survival without major disability is so rare.

A more accurate way of predicting survival is by birth weight, rather than gestation.

Birth Weight Survival (percent)
Pounds are approximate
Vermont Oxford Network NICHD
501-750g (1lb 2 oz - 1 lb 11 oz)
58% 49%
751-1000g (1 lb 11 oz - 2 lb 3 oz)
85% 85%
1001-1250g (2 lb 3 oz - 2 lb 12 oz)
93% 93%
1251-1500g (2 lb 12 oz - 3 lb 5 oz)
96% 96%

Still, survival rates and even major disability rates are not the only practical or moral considerations that I would have to account for. Having a very premature baby, in my own family setting, would mean I would have to commute to a hospital with an advanced enough NICU: probably 40 minutes away and most likely an hour or more. The stresses on our family, the realities of trying to spend my time in a NICU while caring for a nursing toddler, and the emotional and financial drains that an extremely premature baby would entail are all things I'd have to carefully think about.

In addition, my own moral/religious understanding of our life on earth would influence my decisions as well. I strongly believe that life is sacred, but that it is not always appropriate to take heroic measures to prolong life. Death is something to embrace when it is the right time, since we understand it as a passage(and at times a welcome release) from one sphere of existence to another, just as our coming to earth was. It is a temporary separation, although still painful and difficult for those left behind missing their loved one. (For another LDS woman's perspective on this, read Descent's post.)

I hope I will never have to make this kind of decision. Have any of you ever been faced with such a dilemma? If not, have you thought about your own personal criteria for intervening versus letting the baby go?


  1. I just left a long, thoughtful comment, but something happened when I tried to post it...bah.

    I wrote about my sister, who went into preterm labor sometime in the early 20-weeks. They made the difficult decision to allow Harrison to be born naturally, and to let nature continue to take its course. He lived for about five minutes, surrounded only by the love of his family. He lived long enough to be baptized (very important for my Catholic sister and family), allowing my family to have a full funeral for him, which played an important role in my sister's grieving process.

    I've just hit the 26-week mark in my pregnancy, and I have been thinking a lot, too, about what preterm labor would mean for me, my baby, and my husband. I'm planning a homebirth with a midwife, and, in Arkansas, I can only have a midwife-assisted homebirth between 36 and 42 weeks. I have no reason to suspect that I won't make it to 36 weeks, but I have definitely been giving some thought to what our contingency plans might be.

  2. I have no idea what I would do, but I figure I'll just KNOW at the time. I think I would rely a lot on how I felt at the moment and what the Spirit was telling me.

    My good friend had a baby at 24 weeks. She's perfectly fine now. I'd hate to say that was my cut off when my child will grow to be "normal".

  3. I just want to say 'Thank you' for all the posts you do! You help make us think and that is wonderful! My husband and I have had this conversation before and at times it is unnerving! We are in the process of getting ourselves to the temple not only for us but for our kids! I find it amazing that I found your blog and it is nice to hear fellow LDS women's point of views on childbirth and where it can lead and what it brings! Once again Thank You!

  4. I don't know what I would do for sure. But I think, like you, I would be calm knowing the eternity of life.

    I have two friends both with babies smaller than 2 lbs and one has CP now and the other is still too young to really see the lasting effects.

    Having three healthy children myself, I feel really blessed. I know that there are reasons for disabilities and struggle--but sometimes that can be prevented.

    Thank you for your thoughtful posts. I am excited for you to have another sweet little one--you are such a great example and a wonderful mom!

  5. i tend to not make decisions like that based on stats. each child is different and not a stat. i believe that each life has value whether it be difficult on the family or not. there is no way of knowing how that life is going to affect everyone- possible bone marrow match that saves older child should that older child get leukemia??? so many ways a child can put it's mark on history, i couldn't not try to help. i guess i'm a sucker for miracles.

  6. My sister's placenta detached when she was 24-25wks along. Her and the baby both almost died. Her doctors told her he'd NEVER seen a baby survive when it was that bad ... but survive she did. She stayed in the hospital until 2wks AFTER the original due date but she's doing quite well now.

  7. I think it is really easy to make these decisions in theory (in your mind when not actually faced with the impending doom of a real situation). So, I would say respectfully that nobody *really* knows what they would do until faced with it.

    I developed PIH/preeclampsia at 24 weeks gestation. At that time my son's fetal weight estimate was not even one pound. I was told that survival was pretty grim for such a small baby. (He was growth restricted) They sent me home on strict home bedrest for 2 weeks. My pressures came down and kept him cooking.

    At 26 weeks gestation, my blood pressures suddenly became uncontrolled on bedrest and I was admitted to the hospital. Better gestation, better fetal weight of about a pound. They started me on blood pressure meds, oxygen, heparin (for a clotting disorder they discovered from running a thromobophilia panel on a hunch the perinatologist had), and huge amounts of water and food.

    I made it until 27 weeks 6 days when I developed Class I HELLP syndrome. My liver was threatening rupture and my platelets were nearly nonexistent. The "safest" thing to do was an emergency cesarean where we had a chance of saving my son and a chance they could stop my bleeding.

    My son was born weighing 1lb 8oz and was 12 inches long. He was pretty vigorous at delivery for a general anesthesia delivery with apgars of 7 and 8.

    The doctors worked on me for a while as I was having issues clotting. In total I received 6 units of blood and some platelets.

    My husband and I braced ourselves for what the first few days would hold. They would tell us what course of treatment to pursue. Our son's birthweight of 678 grams or 1 lb 8 oz generally does not bode well for outcomes. But he was surprisingly vigorous and the only major complication he endured was respiratory distress. He never had a brain bleed (IVH), never had sepsis while in the NICU, and never had any feeding intolerance (can lead to NEC which can kill).

    In sum total, he spent 7 weeks on a ventilator and 15 weeks in the NICU.

    His particular course told us he "wanted" to be here.

    Now I can say with great joy that he is 3 years old. He is active, healthy, curious, and smart. And surprisingly he is a big boy at 37 pounds and very tall at 41.5 inches.

    Would we have been prepared to withdraw treatment if he had had a massive brain bleed or something else that threatened life long pain or suffering? Yes. But let me say that nobody knows just how hard it really is to face these types of decisions. I wouldn't wish it on my worst enemy.

    If you want to see some pictures of my son today, you can visit my blog. Here is a link to our recent November 2008 shoot.

  8. I was born 5 weeks early, and about 5lbs. Back then, baby had to be 5lbs to be discharged, and I wouldn't put on weight. Apparently I'd eat, but when the nurses went away, I'd throw up. I ended up staying in the hospital for almost 3 months.
    I read a blog by a woman with three very young preemies. I think it's ' She's also LDS. This blog starts with the birth of her third baby and is an interesting insight into the daily life of parenting preemies.

  9. I think you can never really know what you'll do in such a difficult ethical/moral situation until you're faced with it. I find that gray area of 23-26 or so weeks really tough to navigate. Our society tends to favor the "miracle baby" stories, which fuels the desperate attempts to save micropreemies because sometimes certain babies do defy the odds. But that can come at tremendous cost to both individual families (financial, emotional) and to our health care system. We don't usually hear the stories of heroic efforts to save a 1 pound baby that result in months of NICU stay followed by death or major disability and heartache and bankruptcy and emotional stress on the family.

  10. Yes, I thought about it a lot when I was pregnant with the twins. I knew just by virtue of gestating two I was at a higher risk of preterm labor, even though I also knew that my chances of going to term were still excellent--especially with the correct nutritional support.

    I decided my cut off was 26 weeks with steroids on board prior to birth. 28 weeks was really where I felt the most comfortable.

    Ultimately, I did not have to make that choice as they were born here at home at 39 weeks.

    The choice is a very personal one. I know very early babies who've done really well but it's no guarantee, certainly.

  11. I'm so glad I've never had to deal with that particular situation. I find pregnancy to be a bit nerve-wracking at times, not because I don't trust it but because there is so much riding on it. I find it so much easier when my babies are out and I can watch them to make sure they are okay.

  12. Rixa:

    I don't disagree that the media favors the miracle baby stories.

    My point was simply that it is really not as easy as drawing a line of demarcation clearly at a certain gestation or birthweight. There are a few 30 and 31 weekers on a preemie list I am part of who have far far worse outcomes than my son. And there are several 24-26 weekers with outcomes just as good as my son.

    Not always, but usually, preemies first 48-72 hours are pretty telling. And the first week certainly is. If there are respiratory issues, brain bleeds, or NEC those usually surface in the first week. A baby with a grade 4 brain bleed is likely to have life long impacts from it. Our son had no bleeds.

    From the first day they started giving my breastmilk via NG tube, my son tolerated it well and his intestines were not showing the characteristic signs of the immaturity of an average baby his size.

    Making an arbitrary decision not to resuscitate is just as bad (IMO) as making an arbitrary decision TO resuscitate. I firmly believe in watching the baby and taking the cues from him/her.

    Incidentally, I know you live in Canada, so this doesn't really apply to you. But, parents in the U.S. really don't have much of a say as to whether or not the attending neonatologist will resuscitate a 24+ weeker. Many hospitals will offer parents the option of either full resus or comfort care at less than 24 weeks, but most docs resus at 24+ weeks.

    I am not saying whether or not I agree or disagree. Just a point of interest.

    Good luck. I hope you never have to face such a decision. Trust me. The road of prematurity is not an easy one. But given what I have now...a precocious 3 year old keeping me on my toes, I would walk the hard road again.

  13. Rixa,

    it's true you can't really know what you would do unless you were in this awful situation. The reality is that there are so many mothers/babies who this DOES happen to. For some, this happens and the baby does not make it, or it happens to the same woman more than once. I have a friend from Canada who lost 7 babies, all at different stages of pregnancy. It's just awful.

    Some of these women's stories can be found here:

  14. I once heard a Father ask a close friend of mine who is a Nicu Doctor, that he did not want resus for his 27 weeker. My friends said "Sir, I cannot morally do that. That baby has a good chance at a good life."

    Let me share with you another story. shoulder dystocia 7 or 11 minutes. apgars o and o. The Nicu Doctor got reamed by her superiors for continueing the code past 20 minutes. That baby has no residual problems. No cp....nothing... So I guess the outcome of each and every patient is not up to us the HCP, The nicu doc, the ob, the nurse. But if we sit on our hands, you will never know. by not intervening are we not also "playing God"....

    I do my job, I do it correctly, and God is responsible for the outcome.

  15. Pinky is also in the USA. Close to a medical mecca where some doctors have been known to levitate. Very impressive.....KIddding.

  16. Some years ago, I completed a year long fellowship in medical ethics. One of the attending physician/ethicists there did a lot of research on decision making in the NICU. He found that the docs were pretty accurate in predicting death and disability in babies already around 72 hours old (there were exceptions, of course, and babies who had sudden catastrophic events that weren't predictable, and babies who ultimately did well against all the odds.) My personal preference would be to resuscitate if possible, and decide as we saw how the baby responded in the first couple days.
    In real life, many folks (parents and docs as well) have a harder time with choosing to withdraw treatment than they do with choosing to withhold treatment - this makes this course of action a little harder, but I'd rather err on the side of giving a baby a chance, with the option to withdraw treatment if there were severe complications of prematurity like a brain bleed or necrotizing enterocolitis.
    I think it's good to have thought about how you might want to proceed ahead of time. Yes, it's impossible to know exactly how you would make a decision in the real moment, but having some idea ahead of time what your decisions might mean is useful.

  17. I do actually live in the states (my husband is Canadian). I didn't want my post to come across as saying I would for sure to X at a certain number of gestation. But I think there are issues that are really difficult to figure out but worth raising--especially is life at all costs always worth it? Is doing something to preserve life always the right thing to do?

  18. being the mother of a dead baby, i say yes, life is worth trying to save. especially if the child is your own. i hope you never have to be faced with such an experience.

    do you ever feel any fear at all about un-assisted birth? I mean how does one know when one might have complications and need some serious help to save the babies life?

  19. This has been a very interesting discussion. I too was at a vague unease during those critical weeks of my pregnancies. Though I also felt very strongly that everything was going okay. I guess the unease comes partly from the sense that it's unclear to what extent we as parents have control over these decisions. For better or worse. Just the lack of control at all.

  20. Personally I would have to say that I don’t really have a gray area above 24 weeks anymore. I recently graduated from nursing school, and spent the first half year working in a NICU and then in a stepdown nursery (where the premies go when they’ve outgrown the scarier problems but are still hospitalized until they put on more weight).

    Some of the deliveries I saw were just incredible. I saw a 24 weeker who was born crying, and although later intubated on and off, did quite well. In my (limited) experience in NICU nursing, it seems that how well they do is often based on the situation they are born into (ie did mom receive steroids to mature baby’s lungs, was the NICU team present and prepared for the delivery). One baby was a bit older and bigger, and survived but had more of a long-term respiratory struggle than most, due to being born precipitously without steroids in an ER, where no one was prepared to resuscitate a 2 pound baby.

    I believe that every baby’s situation is different, and I would have a hard time making a hard-and-fast cut off based on statistics. With surfactant therapy and other advances, many premies go on to do quite well.

    Great blog, by the way!

  21. I'd want everything possible done to save my baby. I've had to burry a daughter once and I'd do about anything to never have to go through it again. It's a very personal issue though, another great example of how technological, scientific and medical advancement bring about additional new ethical concerns.

  22. Wonderful discussion, Doc.Thanks for opening it up.

    I haven't had to make a decision regarding babies this late. I have had to choose whether or not to intervene with 16 to 20 weekers, how long to do shots to stop labor, what else to do....we have lost four second trimester babies.

    My mother is a NICU nurse. Having heard the stories, I would not approve extreme measures before 26 weeks. I've heard the miracle stories, my stepsister's daughter is one. But our special needs forum is full of children who did not do so well.

    I'm 29 weeks now, and thankful that it's not an issue. We are planning a homebirth, but before 36 weeks, definitely a hospital. Others can choose what they will, but this is my personal comfort level.

  23. Rixa,

    The right thing do to would be to save your child, if at all possible. That means hastening to the hospital if you go into pre-term labor, no matter how early, so as to put your child in the way of the medical care he or she needs. We are called to be defenders of the weak, especially when they are our own children!, just as the Lord "has pity on the weak and the needy, and saves the lives of the needy." (Psalm 72:13)

    The Lord also calls us to "count others more significant than [ourselves.]" (Phil 2:3) That means when deciding whether to intervene, we are not to think of our finances, our time, our convenience. These things are to be laid aside, especially when it comes to the lives of our children!

    We should also give our children the best possible chance of survival, regardless of a possible (or known) disability. ALL human life bears the image of God, and He so often uses the weak to shame the strong. (1 Cor 1:27)


  24. my husband and i have been havign this same discussion lately. I really enjoyed your break down and thoughts on it. (probably b/c they echo my own to much)

    I'm going to pass this along to him b/c I know he'll think it's nice to see we're not the only crazy people who have a window of "no intervention" on behalf of an extremely premature baby. (it's not about our child being "normal" it's about respecting it's life. and death. and everything in between.)

  25. I love your blog. I had to get that out of the way first.

    This is a quick comment because I'm having terrible heart burn and my varicose veins hurt so I need to get off the computer and in a better position. I'm currently 33 weeks gestation with my fourth baby. :)

    I just wanted to comment on the fact that I was born at 26 weeks gestation to a mother who didn't even show signs of pregnancy. Amazing!!! I was born on the Island of Guam back in 1975 weighing in at 1 lbs 4 oz. When I was born, apparently my lungs weren't developed and I was not breathing nor with a heart rate when I came out of my mother. My mother had already lost one baby girl some ten years earlier at the same exact gestation as me. The hospital fought to bring my lifeless body to life. I was incubated and had many blood transfusions etc. As it turns out I was born with cerebral palsy. As a child I went through many surgeries. I had to deal with kids in school making fun of me, but my parents taught me not to take any crap from anyone and my older brothers taught me how to fight by taking my opponent to the ground with me as I of course would always fall. As I grew into my teenager years I began to hate my c.p. I would lie to people about why I walked funny etc. Eventually I finally came to terms with it as an adult in my early 20's. Sometimes it gets me down, my c.p. but my husband is always there to remind me of how strong, beautiful and lucky I am. :)

    Okay I need to go and do something about this heart burn. I'd love to tell you so much more about life with c.p. and being born premature from a grown woman's perspective. perhaps I can do that sometime.


  26. Brigitte,
    Thanks for sharing your story and best of luck with your pregnancy!

  27. You will never know what you'll do until you are living that moment! It might sound selfish to some but I would never give up without a fight! My son was born at barely 25weeks weighing 607g or 1 lb 5oz. He was so very tiny, I was told he had to be resucitated after birth and he sure was a fighter and still is. He spend over 3 month in the NICU and had several things to overcome but he is a happy 4 year old now. I could not imagine not giving my child a chance to fight. He has obviously delays and quiet a bit of issues but nothing that can't be helped, maybe made better or even eventually be taken care off by therapies and lots of care. When my son was born I also had my two yr old to take care off, far from family, a good 45 min from the NICU and with a husband serving in Iraq at that time. I will not claim it was easy but I somehow managed to get thru. Now I'm pregnant with our third child and because of the preeclampsia w/HELLP Syndrom I developed so quickly with my son this is a high risk pregnancy. If God forbit this baby should have to be born premature as well I would try and fight again despite of the added worries, time and effort it would take on mostly my part to care for 3 children, possibly 2 with special needs with my husbands constant absences and deployments due to the military.The Love and Smiles I receive from my kids make it all worth it!

  28. Do you realise that the statistics on surviving prems being "disabled" includes having to wear glasses? Or having "chronic lung disease" which means the baby might need oxygen for a few months at home, and afterwards have no worse quality of life than someone who had chosen to smoke as an adult? Of course, others may have worse disabilities like cerebral palsy, but even this comes in mild, moderate and severe forms. The mild form might just mean the child is a bit clumsy but can walk and run almost as well as a peer.

    Also, of the babies that die, most die in the delivery room without even making it to the NICU alive. Most parents would put their child through 15 minutes of unpleasant medical process for a chance of saving their life. Why is this seen differently for newborns?

    Its best to look into what the statistics actually mean before taking a decision based on them.

    I gave birth to my son at 24+1. He was very sick even for his gestation, and not expected to live. Because we are in the UK, any baby over 24 weeks has the right to resuscitation, although doctors will withdraw treatment if they think it has become futile. My son spent 5 months in hospital and came home on oxygen. He is now a very cheeky 2 year old with few signs of his difficult start.

    Until you've been there it is very hard to say you know what you'd do. My instincts were screaming at me that everything possible should be done. Turns out I was right - we were very lucky, but my instincts to continue were spot on.


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