Down Syndrome Births Are Down in U.S.

Nov. 2, 2009— -- 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."

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 diagnosisof Down syndrome choose to terminate their pregnancies, according toresearch reviewed by Dr. Brian Skotko, a pediatric geneticist atChildren'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.