Twenty-three
I help keep track of the statistics for our NICU and in reviewing our 2005 data noticed that we had an unusually large number of babies born at 23 weeks gestation that year. We also had an unusually good survival rate for them. (I don't say that to brag - these things have a way of balancing out over the years.)
Mostly that (the good survival rate) is good news. I say "mostly" because babies born at 23 weeks gestation cause ambivalent feelings in those of us who care for premies. Twenty-three weeks is pretty much the lowest gestation at which a baby has a real chance of surviving. Nationwide, the survival rate for them is about 30%. Approximately 50% to 60% of the survivors will have moderate to severe impairments, and some of the remainder will have a mild impairment. Putting those numbers together means that a baby born at 23 weeks has about a 15% chance of surviving with no impairment or a mild impairment, and thus the ambivalence. Should we be resuscitating these babies? Should we do everything we possibly can to make them survive?
We spend lots of time and energy discussing this question. If we have time, we try to discuss this with the parents prior to delivery, but even with the best discussion, it's hard to make the parents really comprehend all the issues involved in the short time we tend to have before delivery. In our hospital almost all of the parents opt for full resuscitation and support.
Personally, I'm pretty comfortable with full resuscitation of these babies, although I know others in the neonatal field disagree. I think it's fair to resuscitate them because at almost any other time in life, except at the very beginning or end of life, we would usually opt to give full support to someone with a 30% chance of survival. I am also influenced by a study done several years ago in Canada. In that study, the investigators compared the feelings of self worth of impaired adolescent survivors of premature birth with those of a control group of normal adolescents who had been born at full term. Interestingly enough, the impaired survivors had higher feelings of self worth than the control group. Granted, there were some survivors so impaired they could not be tested, but still the study sure has to make us wonder: who are we to judge the worth of a child with handicaps?
This post only scratches the surface of this huge neonatal issue; I suspect we'll return to it in some future posts.
P.S. The latest edition of Grand Rounds is up at Emergiblog.
Mostly that (the good survival rate) is good news. I say "mostly" because babies born at 23 weeks gestation cause ambivalent feelings in those of us who care for premies. Twenty-three weeks is pretty much the lowest gestation at which a baby has a real chance of surviving. Nationwide, the survival rate for them is about 30%. Approximately 50% to 60% of the survivors will have moderate to severe impairments, and some of the remainder will have a mild impairment. Putting those numbers together means that a baby born at 23 weeks has about a 15% chance of surviving with no impairment or a mild impairment, and thus the ambivalence. Should we be resuscitating these babies? Should we do everything we possibly can to make them survive?
We spend lots of time and energy discussing this question. If we have time, we try to discuss this with the parents prior to delivery, but even with the best discussion, it's hard to make the parents really comprehend all the issues involved in the short time we tend to have before delivery. In our hospital almost all of the parents opt for full resuscitation and support.
Personally, I'm pretty comfortable with full resuscitation of these babies, although I know others in the neonatal field disagree. I think it's fair to resuscitate them because at almost any other time in life, except at the very beginning or end of life, we would usually opt to give full support to someone with a 30% chance of survival. I am also influenced by a study done several years ago in Canada. In that study, the investigators compared the feelings of self worth of impaired adolescent survivors of premature birth with those of a control group of normal adolescents who had been born at full term. Interestingly enough, the impaired survivors had higher feelings of self worth than the control group. Granted, there were some survivors so impaired they could not be tested, but still the study sure has to make us wonder: who are we to judge the worth of a child with handicaps?
This post only scratches the surface of this huge neonatal issue; I suspect we'll return to it in some future posts.
P.S. The latest edition of Grand Rounds is up at Emergiblog.
posted by neonataldoc at 9:58 AM
10 Comments:
Sitting down to listen to this discussion.
Doc,
Given how good you're getting at this, particularly that you're getting better outcomes as years go by, it seems to me arbitrary at best to decide whether you will resuscitate based on gestational age.
And as you know better than I, gestational dating is an inexact science.
best,
Flea
Just because we wouldn't want to be impaired the way these children are doesn't mean they and their parents don't value their lives. All the people with Downs that I've met have been cheerful, fun to have around (just using that as a general example of mental handicaps). I don't think this is a decision that medical professionals should pressure parents to make, that a child who survives a preterm delivery with handicaps is not worth having. Besides, from my experience in OB so far, the mothers in these cases often have ongoing problems which mean that to have a living child at all is an amazing success for them. A lot of times the preemie at 23 or 24 weeks comes after several miscarriages at 16, 20, or 22 weeks.
A very, very difficult issue Doc, thanks for raising it. In my experience many parents are not given the choice of ‘no resuscitation’ even at 23 weeks – and nobody is 24 weeks. Contrary to your population, the community I serve would not choose resuscitation, but have never been given the choice. But that’s another difficult discussion in itself.
I definitely do not believe that the value of any individual should be evaluated in dollars. But I think that some degree of utilitarianism is necessary in dialogue about these issues. How much do you think a 23 weeker costs, in hospital stay alone? In total lifetime costs, if impairment exists? Who pays that? Is it best to spend that on supporting, say, a hundred 23 weekers, rather than providing care to at-risk women and perhaps preventing 10,000 such births? There is no easy or right answer here, but it shows how complex such choices are.
maribeth, talk of the costs involved in preemie care raise my neck hairs. As a parent, I feel like that argument is asking for me to justify my daughter's life, as if my daughter's life isn't as legitimate as the lives of children lucky enough to have been born full-term. I realize that's not what you're saying---that's not your intent. Still, it's what I hear. I have to put a lot of effort into being "objective" about it. Six years later, and it's still a fresh wound.
Carrying that argument to its logical conclusion---who really is worth saving? Who is worth that sort of expense? Heart disease is expensive. Cancer is expensive. Car crash trauma is expensive. When my daughter was born, she had a 50-50 chance---and that's better odds than many crash victims. I have yet to hear any advocates for just providing palliative care for them though, and I can't help but think that the real reason is because people can imagine themselves or their loved ones being seriously injured in a car crash, yet can't imagine that they or their loved ones would give birth prematurely. Enlightened self-interest, y'know? I certainly never expected it---I was looking forward to an all-natural, I-am-woman-hear-me-roar! birth, with Etta James playing in the background in the birthing room, breastfeeding immediately after the birth, and getting to plant the l'il one's umbilical cord under a tree. Didn't work out that way.
Anyway, back to the point---not every preemie who has this intervention is going to survive. But the more who do, the more is learned about how to care for others, no? My parents lost their firstborn; he was born at seven months back in the mid-sixties, when the only care was to lay them aside and let them die on their own. My parents didn't even get to hold their son as he died. My mother never even got a good look at him, as she wasn't wearing her glasses when they whisked him away. While my daughter was in the isolette, my father couldn't help but flash on the fact that if my brother had been born in this day and age, he probably would have survived. A lot has changed in forty years when it comes to preemie care---and it changed because the effort was made to save these little ones. That's why the outcomes keep getting better.
And speaking of outcomes, yes, many of these early preemies have disabilities of some sort. But not all. My daughter wears glasses---just like mama (and her biological father, who I seldom mention since he split long ago). There's probably going to be a limit on viability as far as gestational age, but perhaps in time more preemies will have outcomes like my daughter.
Thank you for sharing your story, La Labu. It means so much coming from the mom of a preemie. I honor your experience and opinion a lot.
That's the very problem with 'utilitarianism' - what's good for society is often very different than what's good for you, and your daughter. The bigger picture says "but what about the million kids with AIDS, for whom we DON'T buy a chance at extended survival, because it's just too expensive?" Their mommas love them too.
I think a part of me wonders about the continued quest to push the limit. Many, maybe most people feel that this is human destiny - to reach higher and achieve more and more and more. But in medicine, to be honest, it sometimes scares me. I think a 'avoid death at any cost' is not necessarily spiritually healthy for a society.
PS Doc this box is too small!
maribeth, thank you for considering my comment in the spirit it was meant. I wanted to convey the vulnerability I felt as the parent of a preemie. When my daughter was born, it was a profoundly jarring experience, like wandering into a parallel universe. One day, I was having the dream pregnancy---no problems, hell, I never even had morning sickness! A few days later....whoa. I'm being told that my daughter has a 50/50 chance of survival, that even if she survives she'll probably be severely disabled, and by-the-way, her legs are black and have poor blood flow, and may need to be amputated. Possibly only one leg; we'll know more later.
I got the rapid-fire rundown of her condition and prognosis literally right after I was wheeled into my hospital room after my emergency c-section. I'd never been in the hospital before. Never had surgery, never had a broken bone, never even had stitches. I was scared as hell being wheeled in there. Oddly enough, I chose to focus on the light fixture in the corner before I went under---I didn't hang the fixture, but I ran the conduit and pulled the wire for it---made the joints for the whip, too. I think focusing on that light helped me get some small feeling of control on the situation. Some sense of familiarity.
Because....it's a very disorienting experience. Believe it or not, I remember practically every word the neonatologist said in that room---including his cadence and mannerisms. This even though I was probably still groggy from surgery. I was handed a picture. Told I could come up and see her in about an hour. I was even told about the "honeymoon period." The doctor was an old hand; he'd given this speech all his life.
Time....time seemed to have a different essence. A couple years later, I was on the road (that's "traveling outside my home local jurisdiction for work" for all the non-construction folks reading this---see! we have our jargon too!) with a tool buddy ("home local hand you pair up with"), and I described the experience to him as like being in a war zone. He's a Vietnam vet, and father of a 28-weeker. He said the description was apt.
For the physicians, nurses, and other staff, it's just another day in paradise. For me, it was Welcome to the Twilight Zone. No, I was never given the option of non-resuscitation, but if I had I would not have taken it. To me, that would have been murder. Worse, murdering my own child. I heard her prognosis and understood. I knew in my head what the chances were (and that was just at the beginning.....). I also knew in my heart that I didn't care what the chances were. That as long as there was a chance of survival, that chance was good enough. Against all odds, I knew that there was always the chance she could be healthy. Illogical? Yep. But I felt it in my bones.
I'm working-class; I'm used to low expectations, and beating them. I knew already, that whatever my girl would be faced with, that she had a fighting spirit. I knew she'd be able to overcome whatever challenges came her way. I still feel that way. Or, perhaps I just have a strong streak of good old fashioned Sicilian fatalism. Whatever.
I don't really know why my girl ended up fine, despite her complications, and other kids in the same scenario did not. I don't even think her physicians could give you a straight-up answer to that one. I do know that she wouldn't have, if not for the knowledge that was already gained from previous years. Indomethacin took care of her patent ductus arteriosis. Laser surgery for ROP prevented blindness.
Asking a parent, especially one thrust unexpectedly into this traumatic situation, to be able to weigh all the parameters....make a life-or-death judgement call on quality-of-life....well, it's something the pros can't do yet. No one would have predicted that my daughter would have had much quality of life. They were wrong.
Also, I think about abuse of authority---potential or actual. I was treated with more respect and was given more detailed information about my daughter after I researched like a demon on the internet. I learned the medical lingo, read studies, learned the rapid-fire pronounciation of terminology, and put on my best "head of the class" face. And I stopped being treated like a dumb-ass construction worker (who means well, but just doesn't know what's really involved here....) and started being treated like I was part of the team. I feel like it made a difference. Even so, I wasn't ever an "equal" member of the team. My daughter was switched on feedings from breastmilk to soy formula without my consent or permission. No one even said a word about it; I discovered it myself. My feeling was, if there was a concern about my daughter's condition being harmed by breastmilk, shouldn't it have been brought to my attention? It was just an "experiment", to see if she would process soy formula faster than the breastmilk (her bowels were sluggish, but hey, you'll have that after an iliostomy, no?). Gaah. The lack of communication may not have been intended as disrespect, but that's how it read to me. It's bad enough having to trust a bunch of total strangers---to have them steamroll you too---that's a bit much.
The breastmilk thing was minor though---what wasn't minor was her surgery. She went through her iliostomy ok....and I was informed that her surgeon was not a pediatric surgeon, but that he was experienced at working on preemies, that he had done this sort of thing before, that he was highly recommended by the neonatologist, yadda yadda. So I said ok. And several months later, that surgeon made front-page news in the local paper for being responsible for the deaths of two children, and the near-death of a third. Seems he had a bad habit of getting higher than a kite before surgery. I learned from the article that at the time I was in the "parent room", discussing my daughter's upcoming surgery, that that surgeon had already lost privileges at another hospital in the city. I was never told that during the discussion.
So yeah---you could say I'm kinda low on trust. At this point, were I ever to be in that situation again, I would take any suggestion from a physician that I should "think about the quality of life" as more-or-less a tacit admission that he or she wasn't going to exactly knock himself or herself out providing my child with the best in care. And I'd ask for a different physician. I don't want to have to trust someone who's clearly on a different page.
Thanks again, everyone, for the comments. See my posting of today, March 10.
Flea, you raise a valid but big issue, too big for the comment section. Maybe some other time! La luba, don't be mad at us neonatal care givers: we really do just want what is best for your baby.
La Labu - your story, your clarity, your momma-bear fight for your daughter, it's really special. Thanks again for sharing it.
I hate to respond to this subject on a purely emotional level but as a physician and a mother of a 23 weeker (confirmed dates IVF) I find it a little disconcerting that neonatologists would feel uncomfortable resuscitating a 23 weeker. Whenever I feel uncomfortable dealing with a certain patient or issue I try my best to find someone else who will take over care for the patient effectively. But it would seem resuscitating even very premature infants is part of the territory of the job so to speak for neos.
Anyhow, I am probably biased - my son has only grade I IVH (excellent prognosis), mild retinopathy requiring no treatment, and BPD in the mild range according to the pulmonologists. It is too early to say for sure but his developmental doctor says he has every prospect of a normal development. And that was after being on a ventilator for 10 weeks with a NICU stay of 110 days! So it horrifies me that people would consider letting these babies die.
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