Test-Tubes and Preemies: The New Normal

Monday, August 09, 2010 - 10:21 AM

Two stories with medical angles find their way intersecting in my life this morning. I’m not so interested in dwelling on my personal biographical details but our conversation with the world’s first “test tube baby,” now a first time mom, and two people involved in the drama and miracle of premature babies these days sure got me thinking.

My wife and I have four IVF (in kids who are what doctors would consider “completely normal.” We also have a seven-month-old son born, doctors would say, “by natural means.” With all of the interventions in the fertilization and birth process and the medical options available after birth there is no meaning to this idea of normal. You might say that the history in our conversation with test tube baby pioneer Elizabeth Comeau (formerly Elizabeth Carr) on the birth of her own baby was in hearing just how our expectations have changed since the advent of In Vitro Fertilization technology. We have no sense that IVF kids are any different than so called “normally” conceived infants. The first test tube baby was an exotic jump into the medical void back in the 1980’s but it’s this concept of “normal” that has been revised in the years since. Normal feels more and more like a romantic fetish about some fictitious Eden where babies are born as though they are the intention of some superior “natural” reality. But maybe it’s the twin ideas of natural and normal that are the real fictions here. Imagining Elizabeth talking with her own child ten years from now about how she was fertilized will probably sound as exotic and strange to the little guy as any discussion about the birds and the bees and how HE came into the world. Birds and bees and test tubes are all part of the new normal that’s getting pretty old by now.

This idea of an elastic normal was also what the theme of our difficult discussion about premature babies earlier this morning. Full term is 40 weeks for a human pregnancy. One of our guests had two children at 30 and 33 weeks respectively. They are both healthy, normal little boys. The other guest guests commented on something called the “incredibly shrinking premature baby,” in that babies are being brought into the world and sustained as early as 23 weeks. This complicates and increases the drama for parents who wonder about the future of their babies and it complicates the medical questions for doctors who have to judge if a preemie is viable or not and why. What constitutes viable, let alone normal? And this expectation of perfect or “stellar” outcome, while “normal” for hopeful parents and heroic doctors is different from the idea of a normal healthy child. Our guest told us that one in three of the early-term high risk preemies have what our guest described as stellar outcomes. That means 60 percent of those outcomes would not be considered normal healthy children. Think about it: based on those stats, it is normal for early preemie outcomes to be abnormal children.

This is where we are now. Normal has no meaning anymore. Did it ever?  If there is anything these two stories tell us it is that external questions of what doctors predict and what parents hope for and some pristine idea of natural are all terms of art. In our family we can’t imagine that our kids will have the slightest interest in differentiating how they were each conceived. With their dad in a wheelchair for most of his life, I can’t imagine our kids making distinctions about normal or abnormal between their parents. (They would be the first to say that any ideas about their dad being abnormal would come from other details than the fact that he can’t walk!)

If anything is normal it is that we can’t predict the future in outcomes or circumstance and that “normal life” if there is such a thing, comes from accepting and embracing that uncertainty, not resisting it and trying to use technology or religion to dodge it in some way. Our expectations may change, but the uncertainty in life and biology goes on.

Dad in a wheelchair, two sets of IVF twins and one surprise “natural” baby what would we call that? In 2010 we would call that totally normal. Oh, and I almost forgot to mention that my wife is a Peabody award-winning, supermodel genius. You think I’m kidding.

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Comments [1]

Madge Buus-Frank from NH

Just to clarify John ~ 33% have outcomes equivalent to non-premature infants (the "stellar outcomes" that I referred to. Another 33% of survivors have one disability that could be classified as "mild: (hearing, or vision (needing glasses), or motor problems). Again there is a "spectrum" here; however, these are typically problems that are considered remediable. These children are in school, sports, etc. The most concerning to many, is the final 33% may have to "minor" or one more major disability. The longer you follow these children, the more they begin to look like the normal population.
Judgements about what is an "acceptable" outcome are very value laden, and different families often make very different choices.

Aug. 09 2010 12:31 PM

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