The last children of Down syndrome

Apeculiar effect of Denmark’s universal-screening program and high abortion rate for Down syndrome is that a fair number of babies born with Down syndrome are born to parents who essentially got a false negative. Their first-trimester screening results said their odds were very low—so low that they needed no invasive follow-up testing. They simply went on with what they thought was an ordinary pregnancy. In other words, like the couple Grete once counseled, these are parents who might have chosen to abort, had they known.

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. Though they support the right to abortion, they knew they would want to have the baby either way. At the meeting, two of the seven other families told me their prenatal screening had suggested extremely low odds. At birth, they were surprised. A few others said they had chosen to continue the pregnancy despite a high probability for Down syndrome. Ulla Hartmann, whose son Ditlev was 18, noted that he was born before the national screening program began. “We’re very thankful we didn’t know, because we had two twin boys when I got pregnant with Ditlev and I really don’t think we would have been, ‘Okay, let’s take this challenge when we have these monkeys up in the curtains,’ ” she told me. “But you grow with the challenge.”

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 said, “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.