The Prenatal Diagnosis of Down Syndrome

The Last Children of Down Syndrome

Prenatal testing is changing who gets born and who doesn’t. This is just the beginning. Photographs by Julia Sellmann. 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?

People often call when they are facing difficult decisions about having an abortion or carrying a pregnancy to term. 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.

They wanted to protect their family from a devastating diagnosis—so heavy are the moral judgments that accompany wanting to bring a child with a disability into the world.

Down syndrome is the most common genetic condition of birth defects and occurs in one of every 700 babies. It’s not life-threatening and is treatable. Karl has an active, independent lifestyle, and his father, the prime minister, says he is his biggest fan.

Karl Emil was diagnosed after he was born. When he was younger, he felt so fragile in her arms and she worried about his health. But she mostly remembered how cute he was. Years later, 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.

More than 95 percent of those diagnosed with Down syndrome choose to terminate the pregnancy. Denmark doesn’t seem to be hostile to disability.

People with Down syndrome should be given health care, education, and even money for the special shoes that fit their more flexible feet. If you ask the Danes about the syndrome, they’ll probably talk about Morten and Peter, two friends with Down syndrome who starred in popular TV programs where they cracked jokes and discussed soccer games.

There is a huge gulf between public opinions and private decisions. The number of people who have been tested for Down syndrome has gone up sharply and the birth rate has dropped since it was introduced.

In 2019 only 18 children with Down syndrome are born in the United States. Fält-Hansen is in a strange position of leading an organization that will have fewer and fewer members.

Her goal in conversations with expecting parents is not to sway them against abortion. She 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 clichés about people with Down syndrome always being happy and from the litany of symptoms given to them upon diagnosis: intellectual disability, low muscle tone, heart defects, gastrointestinal defects, immune disorders, arthritis, obesity, leukemia, dementia.

Yes, he can read, and his notebooks are full of poetry he wrote when he was young. He needed physical and speech therapy when he was young, but he likes music. His favorite Danish pop star modeled the frames of his eyeglasses.

Some people are so busy with their careers that they miss out on their families. This is especially true of those working in the health field. But some people become so caught up in their careers that they lose track of their families and what’s important to them.

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Parents come to this clinic because their child has been diagnosed with Down syndrome. They are faced with a choice—one made possible by technology that peers at the DNA of unborn children. Prenatal diagnosis of autosomal dominant polycystic kidney disease by chorionic villus sampling. Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common inherited human diseases. In about one-third of the families, there is clear evidence of an extra-renal manifestation such as hepatocystosis, choledocholithiasis, or intracranial aneurysm. Prenatal diagnosis by fetal ultrasound is currently based on the demonstration of the kidneys, but there are no systematic methods for identifying and evaluating these associated anomalies.

Screening for the condition is the most morally troubling because it is among the least severe. It’s very compatible with life—even a long, happy life.

More and more testing is being used to identify ever more genetic conditions. In the future, parents will be able to choose to have a child with a specific condition, or not.

It’s already here. It’s been here for decades. Read: “I am a man with Down syndrome and my life is worth living.” Fält-Hansen says the calls she receives are about information, helping parents make a truly informed decision.

I wonder why those women make that choice, whether they chose it because it is best for them or because they want to be selfish, or because they don’t know how they’d survive. But if they want my life or my child’s life, they’re not going to get it. It doesn’t matter if you’re an astronaut or a football player.

Asking these three questions will help you determine which type of business is right for you.

The three of them walked past a group of people who had just gotten out of a cab. They all smiled. A few moments later they went inside the ice cream shop. I asked Karl Emil if he knew the employees. He said that he did. T-cell responses to peptide-MHC class I complex determinants in peripheral blood mononuclear cells from HIV-infected patients receiving antiretroviral therapy.

Karl’s 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, happy and proud. We sat down in a café and he handed his phone to me to do my homework. He made selfies; my mother, his sister, and I began to talk about Down syndrome and the country’s prenatal-screening program.

When Grete was reminded of a documentary about Down syndrome she went to look it up. She found the title: “Death to Down Syndrome.” She turned to Karl Emil and said, “Let’s reclaim our phone.

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.

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He’s also aware that there are people who don’t want people like him to be born? She nodded yes, and said her family has always been open about it. As a kid, he was proud to have Down syndrome. That made him different and special.

It turned out to be not only that he had Down syndrome but also that he was gay. This made him extremely embarrassed as a teenager. However, when he got older he accepted it and no longer felt embarrassed or ashamed.

In this book, we explore what it means to be a teenager, and how those tumultuous teenage years eventually lead us to accept ourselves and find our own voice.

Down Syndrome is a complex condition. As a person with the condition, you might be interested to know that it doesn’t always mean that all your organs and parts work properly. Also, as a parent of a child with Down Syndrome, you might want to know that this condition does not always lead to an early death, nor is there a clear link to having an abortion.

That’s what I saw 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 the rest of Europe and, to a somewhat lesser extent, in the United States.

It’s very common for Down syndrome to be in wealthy countries where there are better health care, more access to education, and more opportunities for people with disabilities. And that’s just fine.

The fact is, few people discuss publicly wanting to “eliminate” Down syndrome. However, people’s personal choices are adding up to a society where more people choose not to have children who carry a diagnosis of Down syndrome.

If no one with Down syndrome ever existed, is that a terrible thing? I don’t know.

With every new generation comes to the risk of more children being born with Down syndrome. This is why it is important to understand the risks that children with Down syndrome face. You can do this by reading The Mother of All Down Syndrome Books.

The patient was a 27-year-old woman who was a carrier of 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.

She got an abortion. She didn’t want to have a son again.

A cytologist named Povl Riis, along with Fuchs had been experimenting with using fetal cells floating in the yellow amniotic fluid that fills the womb to determine a baby’s sex.

A boy has about a 50 percent chance of inheriting hemophilia; a girl has very little chance of inheriting it. But they must have some amniotic fluid for the test to work. To make sure, Fuchs used a long needle and poked it into the woman’s abdomen. Next, he studied the cells under a microscope.

The baby was a girl. If the baby had been a boy, she would have aborted it because it was at risk of having a severe mental or physical illness.

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It wasn’t considered a dangerous thing to stick a needle into a pregnant woman’s stomach, but they thought that it might be useful in preventative eugenics. Today, this term evokes images of forced sterilizations of the mentally disabled in the early 20th century in the US, which led to 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 improving the human race. Denmark, too, drew inspiration from the U.S., and it passed a sterilization law in 1929.

At least 5,940 people were sterilized in Denmark in the next 21 years because they were mentally retarded. Those who resisted had their options limited.

Eugenics in Denmark didn’t become 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.

In the early 1970s, the term “eugenics” fell out of fashion. When Denmark started offering prenatal testing to older mothers for Down syndrome, it was discussed in the context of saving money—that is, it was cheaper to provide medical care than to institutionalize a child who might need care forever.

One of the goals of this organization was “to prevent the birth of children with severe, lifelong disability.

FAQ:

1. How often can I have an amniocentesis?

You can have as many amniocenteses as you like. However, you can only have one amniocentesis every three months.

2. Is there any way to avoid having an amniocentesis?

Yes, you can do blood tests to see if you are carrying a fetus with Down syndrome.

3. What is the risk of having amniocentesis?

The risk of having amniocentesis is less than 1 percent.

4. What are the chances of having a baby with Down syndrome?

The chance of having a baby with Down syndrome is about 1 in

5. What is the treatment for Down syndrome?

There is no treatment for Down syndrome.

6. How many people have Down syndrome?

In 2006, there were approximately 7.5 million people living with Down syndrome.

8. Who should I contact if I have questions about Down syndrome?

You can contact the National Down Syndrome Society.

9. How often can I have an amniocentesis?

You can have as many amniocenteses as you like. However, you can only have one amniocentesis every three months.

10. Is there any way to avoid having an amniocentesis?

Yes, you can do blood tests to see if you are carrying a fetus with other genetic disorders.

11. What is the risk of having amniocentesis?

The risk of having amniocentesis is less than 1 percent.

In conclusion, The Prenatal Diagnosis of Down Syndrome is a great read for anyone who has a child with Down syndrome. If you have a child with Down syndrome, you can read this book to learn more about the history of Down syndrome and how the medical community has changed the way we view the condition.

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