When I was pregnant with my sixth child, I told my doctor that I didn't want to have any prenatal testing.
You'd think a doctor would be happy about fewer tests to order and results to explain, but he wasn't. The fact that I was 41 years old didn't help. Didn't I realize, he asked, that there were risks of genetic problems at my age?
If anyone understood the possibility of genetic problems, I did. Not only am I a pediatrician, but my third child had a genetic problem called Miller-Dieker syndrome. Aidan was severely disabled, with many medical problems, and died at a year old.
An ultrasound during the pregnancy showed that Aidan was missing a part of the brain called the corpus callosum, but nobody could tell us for sure whether this was a sign of a big problem or a small problem. My husband and I chose not to have an abortion; it was already late in the pregnancy, but more importantly, we felt that we could handle whatever he had. The problem ended up being really big, but we didn't regret our decision; we had made it with clear heads and clear hearts.
I worry that many expectant parents don't get to make decisions that way.
Parents can learn a lot about the genetic makeup of their unborn child these days. Of course, everyone wants to have a healthy child. And if you can find out early in pregnancy whether or not your child is genetically normal, of course you should, right? Why not start out in the best way?
There are so many problems with this. First of all, you can't test for every single genetic problem. For what it's worth, the amniocentesis I had when I was pregnant with Aidan was normal. When we did more testing after he was born, we found that he had the genetic mutation that causes Miller-Dieker, but it is such a rare disease that they don't routinely look for it. Some day, probably really soon, we'll be able to tell parents if there are any genetic problems at all -- but even then, it's not the whole story. Genes play out in different ways in different people.
Second, there are some really wonderful people out there with less-than-perfect genes. Aidan had many problems, but he was a beautiful, peaceful child, and our whole family loved him fiercely. He made us look at life and love differently and left us so much wiser. Most of the parents of disabled children I know feel the same way. These people have so much to give us -- and teach us -- and are no less worthy than anyone else.
Third -- and this is the part that gets left out of the conversation almost entirely -- being genetically normal is no guarantee of anything. An illness or an accident can change everything. A child can be perfectly healthy but get caught up in all the wrong things and break your heart a million times over.
I don't mean to sound judgmental of people who choose to end pregnancies when genetic problems are found. These are intensely personal and individual decisions, and decisions that are deeply dependent on circumstances. We did testing for Miller-Dieker with the two pregnancies that followed Aidan's death; while I don't know for sure what we would have done if the condition (or another one) had been detected, it was very clear to us that we didn't want to make our older children watch another sibling die -- and we were worn out emotionally.
But when I got pregnant unexpectedly at 41, I was far enough out to have a bit more perspective, both as a parent and a pediatrician. I'd lived though having a severely disabled child and was better for it -- we all were -- and for all sorts of reasons that are ultimately personal and individual, we decided we were willing to do it again if it happened (which it didn't).
I'd also lived enough of life to understand that control is an illusion. Life, as they say, is what happens while you are busy making plans.
Understanding this, I think, is crucial to being happy parents -- and happy people. But I don't think that most obstetricians are talking about things this way. I don't think they are putting testing into context for expectant parents, helping them really understand the meaning and limitations of test results.
The pace of genetic research is stunning and exciting. But there is more to life and health than genetics -- and when it comes to making decisions about pregnancies, we need to help people understand that.
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