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E very few weeks or so, Grete Fält-Hansen gets down syndrome essay call from a stranger asking a question for the first time: What is it like to raise a child with Down down syndrome essay Sometimes the caller is a pregnant woman, deciding whether to have an abortion. Sometimes a husband and wife are on the line, down syndrome essay, the two of them in agonizing down syndrome essay. Once, Fält-Hansen remembers, it was a couple who had waited for their prenatal screening to come back down syndrome essay before announcing the pregnancy to friends and family.
All of these people get in touch with Fält-Hansen, a year-old schoolteacher, because she heads Landsforeningen Downs Syndrom, or the National Down Syndrome Association, in Denmark, and because she herself has an year-old son, Karl Emil, with Down syndrome.
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.
Inonly 18 were born in the entire country. About 6, children with Down syndrome are born in the U. each year. Fält-Hansen is in the strange position of leading an organization likely to have fewer and fewer new members. 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, down syndrome essay, 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. It was one of the first genetic conditions to be routinely screened for in utero, and it down syndrome essay 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, down syndrome essay, or not have. But that hypothetical future is already here. 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? In January, I took a train from Copenhagen south to the small town of Vordingborg, where Grete, Karl Emil, and his year-old sister, down syndrome essay, Ann Katrine Kristensen, down syndrome essay, met me at the station.
The three of them formed a phalanx of dark coats waving hello. The weather was typical of January—cold, down syndrome essay, gray, blustery—but Karl Emil pulled me over to the ice-cream shop, where he wanted to tell me he knew the employees, down syndrome essay. His favorite ice-cream flavor, he said, was licorice. Grete and Ann Katrine translated. 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.
At one point, Grete was reminded of a documentary that had sparked an outcry in Denmark. 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.
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, down syndrome essay. He could tell he was different, down syndrome essay. This arc felt familiar.
The decisions parents make after prenatal testing are private and individual ones. 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, down syndrome essay, it seems to be at once the best and the worst time for Down syndrome.
Better health care has more than down syndrome essay life expectancy, down syndrome essay. Better access to education means most children with Down syndrome will learn to read and write. Yet individual choices are adding up to something very close to that. The medical field has also been grappling with its ability to offer this power.
But she went on. Sixty-one years ago, the first known prenatal test for a genetic disorder in the world took place in Copenhagen. The patient was a 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 down syndrome essay 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. Fuchs had been thinking about what to do. A boy would have a 50 percent down syndrome essay of inheriting hemophilia; a girl would have almost no risk. But first they needed some amniotic fluid. It was a girl. The woman gave birth to a daughter a few months later. But eugenics was once a mainstream scientific pursuit, and eugenicists believed that they were bettering humanity.
Denmark, too, drew inspiration from the U. 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 s, when Denmark began offering prenatal testing for Down syndrome to mothers over the age of 35, down syndrome essay 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.
Some Danish parents told me that doctors automatically assumed they would want to schedule an abortion, as if down syndrome essay 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.
Pepper Stetler: The gap between my daughter and her peers is growing, down syndrome essay. 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.
Inthere 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 Why so few? Sinceshe has embedded in the fetal-medicine unit at Aarhus University Down syndrome essay, one of the largest hospitals in Denmark, where she has shadowed Sandager and other doctors.
Under the guidelines, all pregnant women in Denmark are offered a combined screening in the first trimester, which includes blood tests and an ultrasound. These data points, along with maternal age, down syndrome essay, are used to calculate the odds of Down syndrome.
The high-probability patients are offered a more invasive diagnostic test using DNA either from the fetal cells floating in the amniotic fluid amniocentesis or from placental tissue chorionic villus sampling. Both require sticking a needle or catheter into the womb and come with a small risk of miscarriage.
That option has not become popular in Denmark, though, down syndrome essay, probably because the invasive tests can pick up a suite of genetic disorders in addition to Down syndrome. More diseases ruled down syndrome essay, more peace of mind. But Lou was interested in the times when the tests did not provide peace of mind, when they in fact provided the opposite. In a study of 21 women who chose abortion after a prenatal diagnosis of Down syndrome, she found that they had tended to base their decisions on worst-case scenarios.
An extra copy of chromosome 21 can cause a variety of symptoms, the severity of which is not known until birth or even later. Most people with Down syndrome learn to read and write. Others are nonverbal, down syndrome essay. Some do not have heart defects.
Others spend months or even years in and out of the hospital to fix a heart valve. Most have healthy digestive systems. Others lack the nerve endings down syndrome essay to anticipate bowel movements, necessitating more surgeries, possibly even a stoma bag or diapers.
The women who chose abortion feared the worst possible outcomes. Some even grieved the possibility of aborting a child who might have had a mild form of Down syndrome. This emphasis on uncertainty came up when I spoke with David Wasserman, a bioethicist at the U. National Institutes of Health who, along with his collaborator Adrienne Asch, has written some of the most pointed critiques of selective abortion.
Asch died in But when Lou subsequently interviewed parents who had made the unusual choice to continue a pregnancy after a Down syndrome diagnosis, she found them more willing to embrace uncertainty.
What is Down Syndrome?
, time: 5:23Prenatal Testing and the Future of Down Syndrome - The Atlantic
Down syndrome research paper topics, custom paper ghostwriters services ca, sample thesis statements for response papers, cheap annotated bibliography ghostwriting services for phd can a machine think essay how to write an offer letter for a house essays for fe del mundo Nov 15, · Behavior essay for students to copy xbox one vs ps4 persuasive essay. Down syndrome informative essay. Why cs major essay prompts dublin. descriptive for essay school, middle Essay essay on good habits words prompts essay middle Essay descriptive for dublin. school Nov 18, · Down syndrome is unlikely to ever disappear from the world completely. As women wait longer to have children, the incidence of pregnancies with an
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