Listen to more stories on audm. Photographs by Julia Sellmann. 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. Karl Emil was diagnosed after he was born. 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. 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 , only 18 were born in the entire country. About 6, children with Down syndrome are born in the U. 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 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. 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 lifeβeven 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. 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? The three of them formed a phalanx of dark coats waving hello. The weather was typical of Januaryβcold, gray, blusteryβbut Karl Emil pulled me over to the ice-cream shop, where he wanted to tell me he knew the employees.
