The Last Children of Down Syndrome

Jun 2, 2021 | News

Prenatal testing is changing who gets born and who doesn’t. Down syndrome was one of the first genetic conditions to be screened and tested for during pregnancy, but “it remains the most morally troubling because it is among the least severe. It is very much compatible with life—even a long, happy life.”

Grete Fält-Hansen leads the National Down Syndrome Association in Denmark and has an 18-year-old son, Karl Emil, with Down syndrome. She speaks with couples when they find out that their baby has Down syndrome through prenatal testing. Grete answers their questions about what it is like to raise a child with Down syndrome. She provides balanced information that fills in the gaps of the extreme stereotypes given to people with Down syndrome. Grete educates these families and even offers to meet in person with her son, if they are interested.

Compared to even a decade ago, women are offered better information when prenatal testing indicates a condition like Down syndrome. Healthcare providers are learning not to assume that the woman will automatically want to pursue abortion, but instead to offer support and resources that lead to fully informed decisions. In the United States, children with disabilities have access to equal education, government subsidized services like speech and physical therapy. These resources are very different from 60-70 years ago when children with disabilities were routinely institutionalized. “Inclusion has made people with disabilities a visible and normal part of society”. 

At a local Down syndrome group in Copenhagen, there are parents in attendance with a variety of experiences during the prenatal screening process. One parent had been told their odds of having a child with Down syndrome were low, around 1 in 1,500, so they didn’t pursue additional testing. They said “what scares me the most is actually how little we knew about Down syndrome”; their son with Down syndrome is now 4 years old. 

One father, a writer in Minnesota who has a 13 year old son with Down syndrome, points to the neurodiversity movement around autism and how that has helped reshape the definition of normal. “We need more kinds of normal”. Another parent to a 6 year old daughter with Down syndrome said it’s “a good thing, when people show up in our lives and they are just normal in a totally different way”.

Read the full article here.