June 21, 2004

Advances in Pre-natal Screening Make for Difficult Choices

The Times' Amy Harmon takes a long, involved look at the new, difficult choices that parents-to-be sometimes face because of prenatal tests like the triple screen.

Earlier, more accurate fetal testing can spot potential birth defects and disabilities sooner, giving parents more time to prepare, or --and this is the focus of most of the article--to terminate the pregnancy rather than deal with the challenges and trials of raising a disabled child. Concerns over quality of life--both parents' and the future kid's--also loom large throughout the piece.

Obviously, the questions that arise around a triple screen and similar tests are among the most difficult expecting parents face, and they have to be able to make them for themselves, in harmony with their own consciences. But ultimately, the article doesn't tell me everything I'd want to know before deciding whether to go ahead and have a child I thought would be physically or mentally disabled.

What's missing: information on the tests' accuracy, for starters, including the false positive rates. More importantly, I want to know what life is actually like for families with, say a Down Syndrome kid, or one with cystic fibrosis. Such a life might indeed be hard, but it could have some transformative, ultimately positive aspects, too. Because it'd be inconvenient or beyond what I thought I was getting myself into isn't enough to justify ending a pregnancy, at least for me, anyway. [Okay, class dismissed.]


Those are very very hard choices to make; not being in the position of being married or expecting a child, I don't think I could cope with having a child who was very ill, but my mom doesn't think it would be that hard (perhaps because she knows what a child's presence can bring into the parents' lives). What bothered me most were the abortions because a woman with three girls and who wanted a boy was pregnant with a girl again or the woman whose child would have a sixth finger (which could be surgically altered).

I had a triple-screen with my daughter (born Sept 2003) and had a positive result -- meaning, a higher chance of having a downs syndrome baby.

We then made the choice to NOT have a amnio or other subsequent tests, because regardless of the results we knew that we would not decide to abort.

At my ultrasound appt the technician looked for "signs" of downs syndrome in the baby -- certain leg and head measumrements can suggest downs in a fetus. These signs were not found, and so my husband and I relaxed a little bit.

My daughter was ultimately born without downs syndrome, completely normal, healthy and happy.

Which leads me to lean towards not taking the triple screen test the next time I get pregnant because -- what's the point?? If we won't be taking any action on the results, is it really valuable information for us to have, and/or worry about?

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