Down Syndrome Births Are Down in U.S.

Photo: Downs Syndrome

After prenatal testing, Boston filmmaker Melanie McLaughlin faced the likelihood that her 12-week-old fetus had Down syndrome, or a heart defect.

She prayed for the heart defect.

Grace, now 2, was born with both: trisomy 21, or Down syndrome, and holes in all four chambers of her heart, which were repaired shortly after birth.

"I fell in love with her and handed her over to the doctor for surgery not knowing if I would get her back," McLaughlin said. "I was swearing to the powers to be that I didn't mean it, I was OK with the Down syndrome."

VIDEO: A teen with Down Syndrome scores a touchdown during a high school game.
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McLaughlin said she realized what a "horrible wish" she had made for her child.

"I was so naive, with no experience with anyone with Down syndrome," she said. "I got a huge education about that later."

"An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children's Hospital Boston.

Birthing trends worldwide show that women are waiting longer to have children and advanced maternal age is associated with increased risk of having a child with Down syndrome.

The number of Down Syndrome cases is declining enough in the United States to raise concerns that research funding to study the congenital condition will dry up. There's also worry that more people will deny themselves what some call the "gift" of raising children with Down syndrome.

About 400,000 Americans have Down syndrome, the most common genetic condition in the United States, which produces an array of challenges, including retardation, delayed language and slow motor development.

In the absence of prenatal testing, the United States would have experienced a 34 percent increase in the number of Down births between 1989 and 2005, Skotko estimates.

Instead, 15 percent fewer such babies were born during that time, representing a 49 percentage point difference between expected and observed rates, according to Skotko's research.

Down Syndrome Myths Drive Decision

And without knowing what it's like to raise a child with Down syndrome, many women will make their decisions based on misinformation -- and myths -- about the disorder, researchers say.

The genetic diagnosis often comes as a shock, and many people assume that raising a child with Down syndrome will be fraught with heartbreak.

But McLaughlin was lucky to be connected with First Call, a program sponsored by the Massachusetts Down Syndrome Congress, which introduced her to a family with a 5-year-old girl who has the disorder.

"She played hide and seek, and she kept jumping out, telling us where she was hiding," McLaughlin said. "She was amazing. I was thinking she would be sitting in a chair unresponsive and drooling.

"Actually, she was much like our other children," McLaughlin said. "We thought, maybe we can go forward."

McLaughlin said she worried about how the child would affect her siblings and the marriage, and who would look after her when she and her husband died.

But according to a study by Skotko, whose sister has Down syndrome, siblings are patient and compassionate. As for the marriage, some couples do experience stress in raising a disabled child, but many grow closer.

"I am concerned about mothers making that informed decision," he said. "Are they making it on facts and up-to-date information? Research suggests not, and that mothers get inaccurate, incomplete and sometimes offensive information."

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