I sighed when I heard the question. It came at a time when on my blog, in response to strong advocates for parents of premature babies, I was trying to stick up for the rights of extremely preterm babies by saying it was hard to let them die when you knew a certain percentage of those you let die would have been normal. At the same time I was having on ongoing conversation with my friend, a strong advocate for babies with gestational ages at 23 and 24 weeks, who thinks that all 23 weekers should be resuscitated, regardless. No fair, I thought. I was taking heat from both sides.
But it's a good question, without a readily apparent answer. I told my friend that with 23 weekers you had to be worried about the kids who might get severe cerebral palsy and require total care, which could be a life of suffering for the child and a huge change in the life of the parents. In other words, twenty-three weekers can turn out better than kids with Down syndrome, but they can also turn out a lot worse. I also mentioned that with the legal climate and the history of the Baby Doe rules, we are reluctant to let Down syndrome babies die without resuscitation. My friend was less than overwhelmed by my arguments.
Having thought about it, though, I think there are a couple of other reasons why we treat the Down syndrome kids differently than the earliest premies, even though the premies have a better chance of having a normal outcome than the Down kids. For one thing, Down syndrome kids don't usually require the huge resuscitative measures and months of intensive care that a 23 weeker does.
But perhaps just as importantly, most parents of Down syndrome kids have already had their chance at saying no to having the baby. Most cases of Down syndrome are diagnosed prenatally now, and parents are often given the chance to terminate the pregnancy. Although I haven't personally seen the hard data on this, I've heard it said that 60 to 90% of parents opt to terminate the pregnancy when told the baby has Down syndrome.
It's funny. When last year I said that Down syndrome kids had no chance of having normal intelligence, I was raked over the coals by some of the parents of Down syndrome children. When I speak up for 23 to 24 weekers, though, it seems the opposite side, those in favor of more parental choice regarding resuscitation, are more vocal. Why is this? Where are the parents advocating for the premies and their right to resuscitation? I don't know, but I'll just keep plugging away in the middle.