Family Matters

Down Syndrome: With Breakthroughs in Testing, a Choice Becomes Tougher

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Courtesy Becker family

Amy Julia Becker with her daughter, Penny, who has Down syndrome.

To help provide more context for women who receive a prenatal diagnosis, Brian Skotko, a doctor in the Down syndrome program at Children’s Hospital Boston who also chairs the clinical advisory board for the National Down Syndrome Society, recently published three surveys — of people with Down syndrome, their parents and siblings — in the American Journal of Medical Genetics.

It’s quite possible that parents who don’t feel positive about their children chose not to participate — after all, what mother or father would feel comfortable admitting they don’t love their child? — but of the more than 2,000 parents who responded, 99% said they loved their child with Down syndrome. Just 4% said they regretted having their child, and 5% reported feeling embarrassed. Among siblings age 12 and older, 4% said they’d trade their brother or sister with Down syndrome for another; 88% said they felt they were better people because of their sibling. A third study analyzed responses from 284 people with Down syndrome: 99% said they were happy with their lives; 4% expressed sadness.

“When expectant mothers get a prenatal diagnosis of Down syndrome, it is an alarming moment,” says Skotko. “They question, Can I love a child with Down syndrome? Can my other children? While families certainly recognize there are unique challenges that come with having a family member with Down syndrome, overall they say it is a positive and even rewarding experience.”

That’s a message that advocacy organizations are eager to spread. For years, they’ve lobbied for their children to be recognized as contributing members of society. If fewer babies with Down syndrome are born, they worry that research about the condition will taper off.  “We feel a sense of urgency now more than ever,” says Gallagher.

In anticipation of a surge of calls from women who can now easily learn early in pregnancy that their fetus has Down syndrome, she has assembled a core group of parents, like Perkins McLaughin, who also got a prenatal diagnosis. “We respect people’s right to choose,” says Gallagher, “but it’s important for them to understand the implications because this is just the beginning — there will be other tests.”

Bonnie Rochman is a reporter at TIME. Find her on Twitter at @brochman. You can also continue the discussion on TIME‘s Facebook page and on Twitter at @TIME.

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