‘As more than 90 percent of women carrying a child with DS choose to end pregnancies, parents raising these kids say they’re a ‘gift”
In its coverage of recent research documenting widespread terminations of pregnancies involving Down syndrome, ABC News shifts its focus to the growing concern that women are making their decisions based on misinformation and myths about the disorder.
Author Susan Donaldson James interviews Dr. Brian Skotko, who says research suggests that mothers are getting inaccurate, incomplete and sometimes offensive information. Advocates for people with Down syndrome worry that the decline in births will lead to reduced funding to study the disorder.
Boston filmmaker Melanie McLaughlin had no knowledge of Down syndrome when her daughter Grace was born, but was encouraged after the First Call program of the Massachusetts Down Syndrome Congress introduced her to a family of a five-year-old with the syndrome.
“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.”
A Connecticut woman told ABC News that she terminated her pregnancy after Down syndrome was diagnosed and her doctor “didn’t paint the brightest picture” and didn’t introduce her to anyone with the condition. She said the stress of the experience made her feel that “we were falling apart.”
A Utah mother said she and her husband were given scant support after a Down syndrome diagnosis and wish they had received accurate information and positive feedback. She and her husband decided not to terminate. Their daughter is now thriving in first grade..
“The most important things you can provide are accurate, up-to-date information, and what it’s like to parent a kid with Down syndrome, just to have someone who walks in those same steps to listen and share their own story,” said Sarah Cullen, family support director for First Call, which takes no position on whether to terminate pregnancies.
At last count, the story had drawn more than 170 comments. Many of the commenters are arguing about abortion rights, while others say the author should have done more to explore the lives of adults with Down syndrome, and did not adequately take into account the shared public cost of their ongoing care. Yet another said the real tragedy here is a society in which caring for people with disabilities is widely perceived as impossibly burdensome, and the health care system cannot be counted upon.
(Photo from ABC News)