A world without Down syndrome?
Widespread prenatal testing means fewer and fewer children are now born with genetic disabilities, said Sarah Zhang in The Atlantic. Those who remain wonder if society will accept them.
EVERY FEW WEEKS or so, Grete Fält-Hansen gets a call from a stranger asking a question for the first time: What is it like to raise a child with Down syndrome?
Sometimes the caller is a pregnant woman, deciding whether to have an abortion. Sometimes a husband and wife are on the line, the two of them in agonizing disagreement. Once, Fält-Hansen remembers, it was a couple who had waited for their prenatal screening to come back normal before announcing the pregnancy to friends and family. They called Fält-Hansen after their daughter was born—with slanted eyes, a flattened nose, and, most unmistakable, the extra copy of chromosome 21 that defines Down syndrome. They were afraid their friends and family would now think they didn’t love their daughter—so heavy are the moral judgments that accompany wanting or not wanting to bring a child with a disability into the world.
All of these people get in touch with Fält-Hansen, a 54-year-old schoolteacher, because she heads Landsforeningen Downs Syndrom, or the National Down Syndrome Association, in Denmark, and because she herself has an 18-year-old son, Karl Emil, with Down syndrome. Karl Emil was diagnosed after he was born. She remembers how fragile he felt in her arms and how she worried about his health, but mostly, she remembers, “I thought he was so cute.” Two years after he was born, 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. Nearly all expecting mothers choose to take the test; of those who get a Down syndrome diagnosis, more than 95 percent choose to abort.
Denmark is not on its surface particularly hostile to disability. People with Down syndrome are entitled to health care, education, even money for the special shoes that fit their wider, more flexible feet. If you ask Danes about the syndrome, they’re likely to bring up Morten and Peter, two friends with Down syndrome who starred in popular TV programs where they cracked jokes and dissected soccer games. Yet a gulf seems to separate the publicly expressed attitudes and private decisions. Since universal screening was introduced, the number of children born with Down syndrome has fallen sharply. In 2019, only 18 were born in the entire country. (About 6,000 children with Down syndrome are born in the U.S. each year.) Fält-Hansen is in the strange position of leading an organization likely to have fewer and fewer new members. The goal of her conversations with expecting parents, she says, is not to sway them against abortion; she fully supports a woman’s right to choose. Her conversations with expecting parents are meant to fill in the texture of daily life missing both from the wellmeaning cliché that “people with Down syndrome are always happy” and from the litany of possible symptoms provided by doctors upon diagnosis: intellectual disability, low muscle tone, heart defects, gastrointestinal defects, immune disorders, arthritis, obesity, leukemia, dementia.
She might explain that, yes, Karl Emil can read. His notebooks are full of poetry written in his careful, sturdy handwriting. He needed physical and speech therapy when he was young. He loves music—his gold-rimmed glasses are modeled after his favorite Danish pop star’s. He gets cranky sometimes, like all teens do.
These parents come to Fält-Hansen because they are faced with a choice—one made possible by technology that peers at the DNA of unborn children. Down syndrome is frequently called the “canary in the coal mine” for selective reproduction. The forces of scientific progress are now marching toward ever more testing to detect ever more genetic conditions. Recent advances in genetics provoke anxieties about a future where parents choose what kind of child to have, or not have. But that hypothetical future is already here. It’s been here for an entire generation.
IN JANUARY, I took a train from Copenhagen south to the small town of Vordingborg, where Grete, Karl Emil, and his 30-yearold sister, Ann Katrine Kristensen, met me at the station. The three of them formed a phalanx of dark coats waving hello. The weather was typical of January—cold, gray, blustery—but Karl Emil pulled me over to the ice cream shop, where he wanted to tell me he knew the employees. His favorite ice cream flavor, he said, was licorice. “That’s very Danish!” I said. Grete and
Ann Katrine translated. Then he zagged over to a men’s clothing store and struck up a conversation with the clerk, who had just seen Karl Emil interviewed on a Danish children’s program with his girlfriend, Chloe. “You didn’t tell me you had a girlfriend,” the clerk teased. Karl Emil laughed, mischievous and proud.
We sat down at a café, and Grete gave her phone to Karl Emil to busy himself with while we spoke in English. He took selfies; his mother, sister, and I began to talk about Down syndrome and the country’s prenatal-screening program. At one point, Grete was reminded of a documentary that had sparked an outcry in Denmark.
She reclaimed her phone to look up the title: Død Over Downs (“Death to Down Syndrome”). When Karl Emil read over her shoulder, his face crumpled. He curled into the corner and refused to look at us. He
had understood, obviously, and the distress was plain on his face. Grete looked up at me: “He reacts because he can read.”
“He must be aware of the debate?” I asked, which felt perverse to even say. So he’s aware there are people who don’t want people like him to be born? Yes, she said; her family has always been open with him. As a kid, he was proud of having Down syndrome. It was one of the things that made him uniquely Karl Emil. But as a teenager, he became annoyed and embarrassed. He could tell he was different. “He actually asked me, at some point, if it was because of Down syndrome that he sometimes didn’t understand things,” Grete said. “I just told him honestly: Yes.”
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.
In the 1970s, when Denmark began offering prenatal testing for Down syndrome to mothers over age 35, it was discussed in the context of saving money—as in, the testing cost was less than that of institutionalizing a child with a disability for life. The stated purpose was “to prevent birth of children with severe, lifelong disability.”
That language has long since changed; in 1994, the stated purpose of the testing became “to offer women a choice.” Activists like Fält-Hansen have also pushed back against the subtle and not-so-subtle ways that the medical system encourages women to choose abortion. Still, the number of babies born to parents who chose to continue a pregnancy after a prenatal diagnosis of Down syndrome in Denmark has ranged from zero to 13 a year since universal screening was introduced. In 2019, there were seven.
The day after I met Grete, I attended a meeting of the local Copenhagen Down syndrome group. The woman who invited me, Louise Aarsø, had a then–5-year-old daughter with Down syndrome, Elea. Aarsø and her husband had made the unusual choice to opt out of screening. At the meeting, two of the seven other families told me their prenatal screening had suggested extremely low odds. Daniel Christensen was one of the parents who had been told the odds of Down syndrome were very low, something like 1 in 1,500. He and his wife didn’t have to make a choice, and when he thinks back on it, he says, “What scares me the most is actually how little we knew about Down syndrome.” What would the basis of their choice have been? Their son August is 4 now, with a twin sister, who Christensen half-jokingly said was “almost normal.” The other parents laughed. “Nobody’s normal,” he said.
Then the woman to my right spoke; she asked me not to use her name. She wore a green blouse, and her blond hair was pulled into a ponytail. When we all turned to her, I noticed that she had begun to tear up. “Now I’m moved from all the stories; I’m a little....” She paused to catch her breath. “My answer is not that beautiful.” The Down syndrome odds for her son, she said, were 1 in 969.
“You remember the exact number?” I asked. “Yeah, I do. I went back to the papers.” The probability was low enough that she didn’t think about it after he was born. “On the one hand I saw the problems. And on the other hand he was perfect.” He is 6 now, and he cannot speak. It frustrates him, she said. He fights with his brother and sister. He bites because he cannot express himself. “This has just been so many times, and you never feel safe.” Her experience is not representative of all children with Down syndrome; lack of impulse control is common, but violence is not. Her point, though, was that the image of a happy-go-lucky child so often featured in the media is not always representative, either. She wouldn’t have chosen this life: “We would have asked for an abortion if we knew.”
WHEN MARY WASSERMAN gave birth to her son, Michael, in 1961, kids with Down syndrome in America were still routinely sent to state institutions. She remembers the doctor announcing, “It’s a mongoloid idiot”—the term used before chromosome counting became common— and telling her “it” should go to the state institution right away. Wasserman had volunteered for a week at such an institution in high school, and she would never forget the sights, the sounds, the smells. The children were soiled, uncared for, unnurtured. In defiance of her doctor, she took Michael home. The early years were not easy for Wasserman, who was a divorced mother for much of Michael’s childhood. There weren’t really any formal day cares then, and the women who ran informal ones out of their homes didn’t want Michael. It wasn’t until he was 8, when a school for kids with disabilities opened nearby, that Michael went to school for the first time.
Michael is 59 now. The life of a child born with Down syndrome today is very different. After children with disabilities go home from the hospital today, they have access to a bevy of speech, physical, and occupational therapies from the government—usually at no cost to families. Inclusion has made people with disabilities a visible and normal part of society. Thanks to the activism of parents like Wasserman, all of these changes have taken place in her son’s lifetime.
I can’t count how many times, in the course of reporting this story, people remarked to me, “You know, people with Down syndrome work and go to college now!” This is an important corrective to the low expectations that persist and a poignant reminder of how a transforming society has transformed the lives of people with Down syndrome. But while jobs and college are achievements worth celebrating—like any kid’s milestones—I’ve wondered why we so often need to point to achievements for evidence that the lives of people with Down syndrome are meaningful.
When I had asked Grete Fält-Hansen what it was like to open up her life to parents trying to decide what to do after a prenatal diagnosis of Down syndrome, I suppose I was asking her what it was like to open up her life to the judgment of those parents— and also of me, a journalist, who was here asking the same questions. As she told me, she had worried at first that people might not like her son. But she understands now how different each family’s circumstances can be and how difficult the choice can be. “I feel sad about thinking about pregnant women and the fathers, that they are met with this choice. It’s almost impossible,” she said. “Therefore, I don’t judge them.”
Karl Emil had grown bored while we talked in English. He tugged on Grete’s hair and smiled sheepishly to remind us that he was still there, that the stakes of our conversation were very real and very human.
Excerpted from an article originally published in The Atlantic. Used with permission.