Parents speak to the upside of Down syndrome

Advocacy groups worry that more prenatal testing will mean fewer children like theirs.


Lynn Harris
May 9, 2007 8:36PM (UTC)

Today's New York Times has a fascinating front-page story about groups of parents who have organized to offer their positive perspectives on the experience of raising children with Down syndrome. These parents have been spurred to action, at least in part, by the increased availability of noninvasive prenatal-testing procedures now recommended for all pregnant women, regardless of age. Their concern: The more often the tests are performed, the more often parents will learn -- in time to terminate, if that is their choice -- that the fetus has the chromosomal abnormality that causes Down. As many as 90 percent of these women will choose to have an abortion, thus leading to fewer children with Down.

(Note: This does not mean that 90 percent of Down pregnancies end in abortion. Many women of all ages, either deliberately or because of a lack of care, have no prenatal testing at all. Some may also receive incomplete results or play the odds with the type of results that offer only a probability of Down, not a yes/no answer.)

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"A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain," says the article. "The richness of their children's lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition."

And, of course, there's this: "Some [of these parents] see themselves as society's first line of defense against a use of genetic technology that can border on eugenics."

These groups meet with local healthcare providers, often bringing their poised and thriving Down children to speak. They rewrite dated literature; they offer to make their happy homes available to prospective parents who've received challenging news and have a decision to make.

How do those in the field react? "Medical professionals have for the most part responded with caution," says the Times. "Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision."

"It's a mistake to say 'your baby is going to be mentally retarded, you should have a pregnancy termination,'" Dr. Allan Nadel, director of prenatal diagnosis at Massachusetts General Hospital, told the Times. "By the same token, I don't think it's quite fair to say 'these are wonderful lovely human beings, you can deal with all of their problems and it's not that big of a deal.' We strive to have the proper balance."

An aside: The test in question is a combination of a very detailed sonogram and two blood tests, offered in the first trimester. Upside: It's noninvasive, totally safe -- which is why it has become so common. Downside -- and the Times skims over this -- it's a screening, not a diagnostic tool. It gives you odds, not an answer. If your results are OK but not great (or worse), you still have to decide if you want one of the by and large safe, but still riskily invasive tests (chorionic villus sampling, if you're still in your first trimester, or amniocentesis). If you find yourself waiting for amnio -- at least 18 weeks -- you find yourself possibly faced with a much more difficult (and ta-da, possibly illegal) decision about termination. In other words, the tests themselves are not quite the panacea the article makes them out to be, no matter what the outcome; they are double-, triple-, quadruple-edged swords.

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Such an interesting topic. So, so tricky; so, so fraught. Should it be one parent's responsibility to make sure strangers' children see faces like their own? Probably not. Would I have wanted to hear from these (clearly well-meaning) parents when I got my own sketchy test results? Probably not, though I'm sure others would. But should we worry about slippery slopes? I know I do. On the one hand, I deeply believe in everything "choice" (for lack of a better word) means. On the other, my sister-in-law has dwarfism; I feel queasy knowing that her condition, arguably less challenging than Down, has, for some parents, been grounds for abortion. Yes, indeed, when you "put a face on it" -- as these parents strive to do -- it is, for better or for worse, a whole new conversation. Thoughts?


Lynn Harris

Award-winning journalist Lynn Harris is author of the comic novel "Death by Chick Lit" and co-creator of BreakupGirl.net. She also writes for the New York Times, Glamour, and many others.

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