Lately, though, some comments on my blog have me wondering if the village concept of raising a child could be useful in some special situations. I think particularly of severely impaired children, children who can really be a burden on their families. These kids can take a tremendous toll on a family, perhaps leaving them with inadequate time for their siblings or maybe leading to marital strife and divorce. If we had a more supportive network for the families, if we shared more of their burden, then life might be better for all.
This is relevant to the issue of whether to resuscitate extremely preterm babies or not. Let's face it: The reason some people don't want their, or perhaps other's, very premature kids resuscitated isn't because they are afraid the baby might die; he's going to do that anyway if not resuscitated. The big concern is that he might turn out to be severely impaired. He could develop severe cerebral palsy, leaving him unable to walk or talk and incontinent even as an adult - and leaving the family with a life completely different than they had ever imagined. If all extremely preterm babies when resuscitated would either die or turn out normal (or perhaps very mildly impaired), we wouldn't have much of a discussion about resuscitating them. We'd go for it on every one. It's the possible burden of that severely impaired child that gives us pause.
Some may say that one of the reasons parents don't want their tiny babies resuscitated is not because they are afraid of caring for them but because they don't want to see them suffer. This is a legitimate point, but when parents are first thinking of this, in the delivery room with mom in preterm labor or with ruptured membranes, I'm guessing that it's the care of a severely impaired child more than its suffering that influences them.
So if society wants us to resuscitate babies even when they have a significant risk of having impairments - and if you look at the Baby Doe rules or the Born Alive act, society does seem to want us to do so - then society should ante up and make it easier for families with such children. And I'm not talking about a little help like some supplemental income. I'm talking about a lot of help, help with taking the impaired child into your home for weekends or weeknights, help with changing his diaper when he's 16 years old, help with controlling his emotional outbursts, help with calming him when he's crying from reflux heartburn. I'm talking about help that would truly give the family some respite and make their life better, day in and day out, and week in and week out.
I don't see society forming true village support for impaired kids any time soon. Talk to parents of such children; they are lucky to find someone to take care of them one or two weekends a year so mom and dad can get away by themselves for a break. I don't hear anyone clamoring to raise taxes so we have more money for services for these kids. A child's problems are the family's burden and will remain so for a long time. We will continue to not resuscitate some kids who would have turned out normal because we are afraid they might not be.