The Last Children of Down Syndrome
The Atlantic|December 2020
Prenatal testing is changing who gets born and who doesn't. This is just the beginning.
By Sarah Zhang

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. “We wanted to wait,” they’d told their loved ones, “because if it had Down syndrome, we would have had an abortion.” 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. These conversations are meant to fill in the texture of daily life missing both from the well-meaning 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.

One phone call might stretch into several; some people even come to meet her son. In the end, some join the association with their child. Others, she never hears from again.

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. It was one of the first genetic conditions to be routinely screened for in utero, and 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.

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.

Fält-Hansen says the calls she receives are about information, helping parents make a truly informed decision. But they are also moments of seeking, of asking fundamental questions about parenthood. Do you ever wonder, I asked her, about the families who end up choosing an abortion? Do you feel like you failed to prove that your life—and your child’s life—is worth choosing? She told me she doesn’t think about it this way anymore. But in the beginning, she said, she did worry: “What if they don’t like my son?”

In January, I took a train from Copenhagen south to the small town of Vordingborg, where Grete, Karl Emil, and his 30-year-old 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.

Elea Aarsø, 6, shown with her father and her sister (and in the opening spread), is the youngest of Âve children. Her parents opted out of the prenatal screening for Down syndrome because, though they support the right to abortion, they knew they would have the baby either way.

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.” As he’s gotten older, she said, he’s made his peace with it. This arc felt familiar. It’s the arc of growing up, in which our self-assuredness as young children gets upended in the storms of adolescence, but eventually, hopefully, we come to accept who we are.

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.

Denmark is unusual for the universality of its screening program and the comprehensiveness of its data, but the pattern of high abortion rates after a Down syndrome diagnosis holds true across Western Europe and, to a somewhat lesser extent, in the United States. In wealthy countries, it seems to be at once the best and the worst time for Down syndrome. Better health care has more than doubled life expectancy. Better access to education means most children with Down syndrome will learn to read and write. Few people speak publicly about wanting to “eliminate” Down syndrome. Yet individual choices are adding up to something very close to that.

In the 1980s, as prenatal screening for Down syndrome became common, the anthropologist Rayna Rapp described the parents on the frontier of reproductive technology as “moral pioneers.” Suddenly, a new power was thrust into the hands of ordinary people— the power to decide what kind of life is worth bringing into the world.

The medical field has also been grappling with its ability to offer this power. “If no one with Down syndrome had ever existed or ever would exist—is that a terrible thing? I don’t know,” says Laura Hercher, a genetic counselor and the director of student research at Sarah Lawrence College. If you take the health complications linked to Down syndrome, such as increased likelihood of early-onset Alzheimer’s, leukemia, and heart defects, she told me, “I don’t think anyone would argue that those are good things.”

But she went on. “If our world didn’t have people with special needs and these vulnerabilities,” she asked, “would we be missing a part of our humanity?”

Sixty-one years ago, the first known prenatal test for a genetic disorder in the world took place in Copenhagen. The patient was a 27-year-old woman who was a carrier for hemophilia, a rare and severe bleeding disorder that is passed from mothers to sons. She had already given birth to one infant boy, who lived for just five hours. The obstetrician who delivered the baby, Fritz Fuchs, told her to come back if she ever became pregnant again. And in 1959, according to the published case study, she did come back, saying she couldn’t go through with her pregnancy if she was carrying another son.

Fuchs had been thinking about what to do. Along with a cytologist named Povl Riis, he’d been experimenting with using fetal cells floating in the yellow amniotic fluid that fills the womb to determine a baby’s sex. A boy would have a 50 percent risk of inheriting hemophilia; a girl would have almost no risk. But first they needed some amniotic fluid. Fuchs eased a long needle into the woman’s abdomen; Riis studied the cells under a microscope. It was a girl.

The woman gave birth to a daughter a few months later. If the baby had been a boy, though, she was prepared to have an abortion— which was legal under Danish law at the time on “eugenic grounds” for fetuses at risk for severe mental or physical illness, according to Riis and Fuchs’s paper describing the case. They acknowledged the possible danger of sticking a needle in the abdomen of a pregnant woman, but wrote that it was justified “because the method seems to be useful in preventive eugenics.”

That word, eugenics, today evokes images that are specific and heinous: forced sterilization of the “feebleminded” in early-20th-century America, which in turn inspired the racial hygiene of the Nazis, who gassed or otherwise killed tens of thousands of people with disabilities, many of them children. But eugenics was once a mainstream scientific pursuit, and eugenicists believed that they were bettering humanity. Denmark, too, drew inspiration from the U.S., and it passed a sterilization law in 1929. Over the next 21 years, 5,940 people were sterilized in Denmark, the majority because they were “mentally retarded.” Those who resisted sterilization were threatened with institutionalization.

Eugenics in Denmark never became as systematic and violent as it did in Germany, but the policies came out of similar underlying goals: improving the health of a nation by preventing the birth of those deemed to be burdens on society. The term eugenics eventually fell out of favor, but in the 1970s, when Denmark began offering prenatal testing for Down syndrome to mothers over the age of 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.”

Karl Emil Fält-Hansen, who is 18, lives with his family in the small town of Vordingborg, Denmark.

That language too 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. Some Danish parents told me that doctors automatically assumed they would want to schedule an abortion, as if there was really no other option. This is no longer the case, says Puk Sandager, a fetal-medicine specialist at Aarhus University Hospital. Ten years ago, doctors— especially older doctors— were more likely to expect parents to terminate, she told me. “And now we do not expect anything.” The National Down Syndrome Association has also worked with doctors to alter the language they use with patients—“probability” instead of “risk,” “chromosome aberration” instead of “chromosome error.” And, of course, hospitals now connect expecting parents with people like Fält-Hansen to have those conversations about what it’s like to raise a child with Down syndrome.

Perhaps all of this has had some effect, though it’s hard to say. 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. (Eleven other babies were born to parents who either declined the test or got a false negative, making the total number of babies born with Down syndrome last year 18.)

Suddenly, a new power was thrust into the hands of ordinary people—the power to decide what kind of life is worth bringing into the world.

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