Wednesday, May 9, 2007

A Gray Area of Choice: Down Syndrome vs. Genetic Testing

All women over the age of 35 are encouraged to have genetic testing to determine whether their babies have Down Syndrome or some other type of genetic condition. In many cases, "encourage" is too soft for the type of pressure mothers are under. If you are over 40 and elect not to have an amnio, you are questioned not only by doctors but also by well-meaning friends and family. (Believe me, I know...)

There is a campaign amongst families of Down Syndrome children to educate Americans about these children and encourage obstetricians and genetic counselors to learn more about the condition. About 90% of babies who are diagnosed with Down Syndrome are aborted each year. The decision to have a Down Syndrome baby is now a choice in many cases. The families are concerned that with fewer and fewer Down Syndrome children, the more difficult it will be for them to be able to find a community and get needed resources and legislation. The New York Times has an article and some excellent videos about this campaign.

As with so many of these types of topics, I find myself on the fence with this issue, and my personal feeling differs from my political and overall perspective. We decided not to have an amnio with either of the babies I had over 35 (and one over 40), because of (1) the increased chance of miscarriage or premature birth, and (2) our belief that whatever happens is meant to be. With my most recent pregnancy, we discovered through the 20-week ultrasound that Nicholas had a "soft marker" for the fatal form of Trisomy. The doctor on call strongly suggested that we should change our mind about not having an amnio. Fortunately, my regular perinatologist completely supported our decision not to do so. I must say I was tempted to go the amnio route, given the fact that it was an unplanned pregnancy and such a birth would have been devastating for all of our family. Ultimately, we decided against the amnio, partly because the chance of having Trisomy 18 was still very small statistically. I imagine that knowing that my mom had German Measles when she had me--pre-prenatal testing, and they had no idea how I would be affected--might have also had an effect on me subconsciously. If our third child had been born less than "normal," we would have loved him and viewed his life as a gift, however difficult our journey might have been.

Prenatal testing is a mixed blessing. I have an e-mail acquaintance who had one daughter whose life was saved because of prenatal testing. However, on her next pregnancy, the prenatal tests indicated an abnormality, they decided to terminate, and then discovered that the baby was completely fine. It was a mistake in the lab. Can you imagine the devastation and anger these parents feel?

It's no wonder that 90% of Down's pregnancies are terminated...I know many parents who were strongly urged to terminate their pregnancies when Down Syndrome or some other condition was detected. This is why parents of Down Syndrome kids need to educate obstetricians and genetic counselors. It's one thing to educate parents, but to try to convince them that a child with Down's does not have a life worth living is quite another.

From a bigger-picture perspective, I passionately believe that parents should be well informed and should have CHOICES. I am pro-choice. I don't think that people should bring children into the world unless they can provide loving homes and environments for them. But on the other hand, the 90% statistic makes me sad. Do we need to have "perfect" babies? I know that some parents facing the prospect of having a micropreemie elect not to rescusitate, and although I believe they should be able to make that choice, it makes me sad too. Just because a baby is born "normal" doesn't mean that he or she will live a normal life...who knows what can happen. As one of the moms on one of the videos said, of her three children, she thinks that her son with Down's is the easiest.

Rambling thoughts. Does this make any sense?

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