As someone who takes care of tiny babies for a living, my first reaction is to be defensive, but that's not really fair. I think of what it would be like to have a child with devastating impairments. It is a huge burden, not only the daily grind of their immediate care, but also the fear of what will happen when the parents are no longer there to care for them. We may be tempted to say that the parents think it's all about themselves, and their own desire for an easier life, but I believe them when they say one of the hardest things is to see their child suffer, suffer through things like endless shunt revisions or heel cord lengthenings.
The problem is that if we don't resuscitate 23 to 25 weekers in order to prevent having survivors with significant disabilities, we also let some babies die who would have been normal or survived with milder problems. The Epicure study, recently discussed on Ex Utero's blog (the abstract is also reproduced there) looked at babies born in 1995 at 23 to 25 weeks gestation. At age 6 years 80% of them had some disability: 22% had severe disability, 24% moderate disability, and 34% mild disability. We can all agree there's room for improvement there.
But does that mean we shouldn't resuscitate 23 to 25 week gestation premies? It partly comes to a question of what the worth is of children with mild and moderate disabilities. For every case of severe disability you prevent by not resuscitating 23 to 25 weekers, you lose about three kids who would have had moderate or mild disabilities or been normal. For every case of severe or moderate disability you prevent, you lose one kid who would have been normal or had mild disability. I understand why people want to prevent cases of severe disability, but can you see why I'm a little uncomfortable if I don't resuscitate 25 weekers? I feel bad for the normal and mildly impaired kids who won't make it. They might not be the brightest kids in our world, and they might have a high incidence of ADHD and maybe even psychiatric problems, but they can enjoy life, and I think their lives have value.
Many will say it is the family's decision to make these kinds of trade offs, and to a large extent it is. But society has a say in it too, and there is a limit to what we let families do. For example, if a family asked me to not resuscitate a 28 weeker - who has a better than 90% chance of survival and about a 10% chance of cerebral palsy - and just let him die, I would refuse their request, and I think most of society would back me up on that. Where, then, is the boundary where I should acquiesce to the parents' request for non-intervention versus deny it?
We are usually saved from this tough decision because the fact of the matter is that very few parents ask us to not resuscitate their child. It's much more common for them to ask us to resuscitate a 21 weeker than to not resuscitate a 25 weeker, and, at least in my case, it's not because I'm sugar coating the information. But it's not surprising that most parents ask us to do everything, because it is so much easier than it is to say let my baby die. The former is almost the default decision; the latter takes a lot of gut wrenching thought and courage.