I haven’t been the most active blogger lately as my writing time is rare these days, but here is the somewhat tossed-together topic I am working on: If it looks like a preemie is about to be born, the doctors give you statistics about the possibility of impairment for your child. When you’re a parent in crisis, this sounds awful, but what do they really mean?
Our Gabriel was born at 22 weeks and 6 days of gestation, at which the neonatologists were trying to talk us out of resuscitation. They gave us statistics about survival, and then survival with “profound neurodevelopmental impairment,” and survival with “moderate to severe neurodevelopmental impairment.” In our situation, it was something like a 20 percent chance of survival, and then within that group of survivors, there was a 30 percent chance of Gabriel being able to avoid either category of impairment. Put those together, and this meant Gabriel had a 6 percent chance of dodging all three bullets, that is, death, profound impairment, and moderate-to-severe impairment.
He’s now three, and indeed does seem to be impairment free. But then I went back and looked at those statistics, available here on the National Institutes of Health site. And, what gets you in to the “moderate to severe category” is a score of less than 70 on the Bayley II scale, which Gabriel has actually done once or twice in his evaluations at therapy centers. He’s quite an active kid who interacts with people, walks, talks, is able to play with toys, arrange things by color, and an assortment of other child behaviors. We know he’s delayed on a number of them, but hadn’t thought of him as “impaired.” It seems that at times in his development, he has fallen in to the “moderate-to-severe impairment” category.
Which is kind of troubling to me, because these statistics are presented to parents in a life-or-death situation, that is, when parents could legally choose to have their babies not treated and allowed to die in the delivery room. With a scary title such as “moderate to severe neurodevelopmental impairment,” I wish the doctors would explain more what this means. In our case, it means he’s in developmental preschool and may get held back a year from kindergarten.