By Dave Andrusko
Back in September we repost a story that told the grim truth about the fate of babies with Down syndrome in Denmark. In 2019 there were virtually none—just 18!
I immediately thought of that story and of the 2017 story from CBS News about Iceland titled “What kind of society do you want to live in? Inside the country where Down syndrome is Disappearing” when I read “The last children of Down Syndrome” by Sarah Zhang, which is a brilliantly written piece that appears in the current Atlantic magazine.
The subhead puts the story in the larger context: “Prenatal screening is changing who gets born and who doesn’t. This is just the beginning.”
Nobody questions the legality of abortion in Denmark, Zhang writes.
“Danes are quite open about abortion—astonishingly so to my American ears—but abortions for a fetal anomaly, and especially Down syndrome, are different. They still carry a stigma.”
Why this is so is the thread that runs through this long must-read story.
The backdrop is that “in 2004, Denmark became one of the first countries in the world to offer prenatal Down syndrome screening to every pregnant woman, regardless of age or other risk factors,” Zhang explains. “Nearly all expecting mothers choose to take the test; of those who get a Down syndrome diagnosis, more than 95 percent choose to abort.” The few babies born with Down syndrome are typically because of a “misdiagnosis” or because the parents are told the odds of having a baby with an extra chromosome were almost infinitesimally small.
One of the questions raised is why women abort and how influential gloom and doom prognostications can be. The sister of Karl Emil, an 18-year-old young man with Down syndrome who is the heart of the story, put it this way:
Think about it this way, Karl Emil’s sister, Ann Katrine, said: “If you handed any expecting parent a whole list of everything their child could possibly encounter during their entire life span—illnesses and stuff like that—then anyone would be scared.”
“Nobody would have a baby,” Grete [Fält-Hansen, their mother] said.”
Or, looked at another way, are women exercising genuine “choice” in such a cultural setting? When the expectation is a woman carrying a baby with Down syndrome will abort? When, while the language (“mongoloid”) is not so harsh, physicians not quite so brutally dismissive of these children, and less emphasis is publicly placed on “saving money” by aborting as was the case years ago, the message still rings clear: aren’t all of us, including the child, “better off” if he/she is aborted?
As Zhang writes, “The decisions parents make after prenatal testing are private and individual ones. But when the decisions so overwhelmingly swing one way—to abort—it does seem to reflect something more: an entire society’s judgment about the lives of people with Down syndrome. That’s what I saw reflected in Karl Emil’s face.”
The constant back and forth cultural narrative is between the virtual absence of children with Down syndrome and guilt that Danes, in so doing, are not living up to their own image of themselves or their culture.
“I think it’s because we as a society like to think of ourselves as inclusive,” Stina Lou [a researcher] said. “We are a rich society, and we think it’s important that different types of people should be here.” And for some of the women who end up choosing abortion, “their own self-understanding is a little shaken, because they have to accept they aren’t the kind of person like they thought,” she said. They were not the type of person who would choose to have a child with a disability.
One other thought. It’s a long quote, but it speaks to what we lose when achievement is so highly prized at the expense of more important qualities:
Stephanie Meredith, the director of the National Center for Prenatal and Postnatal Resources at the University of Kentucky, told me of the time her 20-year-old son saw his sister collide with another player on the basketball court. She hit the ground so hard that an audible crack went through the gym. Before Meredith could react, her son had already leapt from the bleachers and picked his sister up. “He wasn’t worried about the rules; he wasn’t worried about decorum. It was just responding and taking care of her,” Meredith told me. She had recently been asked a simple but probing question: What was she most proud of about her son that was not an achievement or a milestone? The incident on the basketball court was one that came to mind. “It doesn’t have to do with accomplishment,” she said. “It has to do with caring about another human being.”
That question had stayed with Meredith—and it stayed with me—because of how subtly yet powerfully it reframes what parents should value in their children: not grades or basketball trophies or college-acceptance letters or any of the things parents usually brag about. By doing so, it opens the door to a world less obsessed with achievement. Meredith pointed out that Down syndrome is defined and diagnosed by a medical system made up of people who have to be highly successful to get there, who likely base part of their identity on their intelligence. This is the system giving parents the tools to decide what kind of children to have. Might it be biased on the question of whose lives have value?