Researchers have created a remarkable portrait of life for those with Down syndrome — and the people who love them.
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Through the lens of a series of surveys conducted by Children’s Hospital Boston, the Down syndrome experience looks far different — and far happier — than the one most of us are used to picturing.
Most parents who answered the survey said they were proud of their child with Down syndrome, felt their outlook on life was more positive because of the experience — and had no regrets about having the child.
Those with Down syndrome and their siblings also reported an overwhelmingly positive quality of life.
Still, as heartening as these findings are, I don’t think they will make a bit of difference to parents deciding to end pregnancies once Down syndrome is discovered in a fetus.
Already, you might have noticed that you don’t see as many people with Down syndrome around as you used to.
The condition, caused by an extra chromosome, is easy to spot. The flat nose, smaller head and upward slanting eyes usually signal a range of intellectual impairment and other health problems, such as heart and stomach defects.
Down syndrome is almost universally seen as something to be avoided. There is little research on this issue, but genetics clinics report that the vast majority of expectant women who find out their fetus has the extra chromosome end the pregnancy.
That’s what makes the surveys by Dr. Brian Stotko of Children’s Hospital Boston and his colleagues so interesting.
Now, there are serious limits to these findings, published in the American Journal of Medical Genetics. Only half the parents the surveys were sent to answered, and those who did were far better off economically than the average American family.
Parents who raise a child are certainly likely to see value in that child — a view often reinforced by common religious views that teach acceptance of every child as a “gift from God.” The responses from 284 people with the condition came just from those able to respond; other are too disabled to do so.
Still, the bottom line is that Down syndrome is not uniformly bleak for those who have it nor for their families. This is clearly information that ought to get more play among doctors, genetic counselors, relatives and neighbors — all of whom often weigh in with nothing good at all to say about Down kids to prospective parents.
All that said, I doubt this first-of-its kind information about the quality of life enjoyed by those with Down syndrome and those who know them best will make much difference in the decision to end these pregnancies.
Testing for Down syndrome is moving earlier and earlier in pregnancy and is becoming less invasive and much safer due to new tests that can find and analyze fetal cells in a mother’s blood at nine weeks of pregnancy. The earlier the test, the less difficult the choice of abortion becomes for many.
Add in the fact that ours is a society obsessed with perfection in ourselves and our offspring and, the climate for having kids with Down syndrome, happy though they may be, is not good.
Having an abortion for medical reasons is a highly personal decision. Those making it need accurate information even if parents-to-be intent on raising a “perfect” child are not likely to be swayed. But for families with Down syndrome, perfect is in the eye of the beholder.
Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania.
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