Parents of Down children air syndrome's positives

DETROIT — Sarah Itoh, a self-described "almost-11 1/2," betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.

She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior Girl Scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

"I am so lucky I get to do so many things," she concluded. "I just want you to know, even though I have Down syndrome, it is OK."

Sarah's appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.

Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result, many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.

About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.

Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a "first call" network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.

The parent evangelists are driven by a deep-seated fear for their children's well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.