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No right to life for kids with Down syndrome?

Brigitte Osterath
March 21, 2017

People with Down syndrome can live healthy, happy lives. That is, if they are born at all. A high percentage of women terminate pregnancies if they discover their unborn child has Down syndrome. Are they right to do so?

Baby Gammy Leihmutter Down Syndrom Thailand Australien
Image: Reuters

Whenever Philipp Peters meets up with his younger brother he receives a very affectionate welcome.

"My brother is totally happy to see me and he lets it show," Peters tells DW.

Philipp Peters' brother has Down syndrome. The genetic disorder, also called trisomy 21, is associated with delays in physical growth and mild to moderate intellectual disability.

But there's more - and not all of it is a disadvantage in life. 

"People with Down syndrome are also incredibly cordial," says Peters, who works for the "Lebenshilfe Northrhine-Westfalia." The organization campaigns for people with disabilities to be better integrated in society.

Despite his intellectual challenges, Philipp Peters' brother is a beloved family member. Philipp says the two have had "a quite normal sibling relationship."

genome of a person with Down syndrome
Trisomy 21: That's three number 21 chromosomes, instead of two

Peters says people with Down syndrome can now live a happy life and that they are an important part of our societies. Other people working in the field agree. But many pregnant women seem to assume otherwise.

Fewer and fewer babies with Down syndrome are being born.

Dead before birth

In European countries it is estimated that roughly nine out of ten women decide to have an abortion if they are told they are carrying a child with Down syndrome.

It's become almost routine for pregnant women to screen for Down syndrome, especially among women who get pregnant in their late 30s and early 40s. 

And it's become quite easy to find out whether your unborn baby has trisomy 21.

A non-invasive prenatal test can analyze a mother's blood for an embryo's DNA. The test screens for the probability of the embryo having trisomy 21. If the probability is high, the mother can then elect to have an amniotic fluid test for a more precise reading.

This relatively new non-invasive screening method is much more precise than earlier tests, which combined a blood analysis with an ultrasound test.

The availability of these tests is said to have led to an increase in abortions among women carrying babies with trisomy 21. 

But Gert de Graaf of the Dutch Foundation Down Syndrome says that trend was already seen with earlier - less precise - screening tests.

That's because in 2003 Dutch authorities decided every pregnant woman in the Netherlands should actively be informed about the option of screening, using the combined blood analysis and ultrasound test. Since then, says de Graaf, fewer babies with Down syndrome have been born.

De Graaf points out, however, there are many parents who do not want to participate in the screening program "because they simply don't want to know. For them, trisomy 21 is not a reason for abortion."

Only about one third of pregnant women in the Netherlands decide to screen for trisomy 21. And yet about twice as many children with Down syndrome would be born if there were no abortions.

Prenatal Diagnosis - A New Test for Trisomy 21

Now, with the more precise, non-invasive blood tests becoming widely available, even more pregnant women may chose to screening for Down syndrome, and the concern is that this could lead to a greater increase in abortions. "But we don't know that yet," says de Graaf.

Different from country to country

A look at EUROCAT, a database for European surveillance of congenital anomalies, reveals that numbers in Germany are similar to those in the Netherlands. 

About 50 percent of babies thought to have trisomy 21 are simply not born - as their parents terminate the pregnancy.

The number of children born with Down syndrome seems to depend on the number of pregnant women who participate in screening.

Take Denmark, for example. There, Down syndrome screening is free-of-charge. About 90 percent of pregnant women get it done. There is even "a subtle social pressure to do the screening," suggests de Graaf. And as a result, almost no children with Down syndrome are born in Denmark.

The situation is a little different in the US, where abortion is not widely accepted. Abortion is legal but it remains a divisive issue. Studies suggest  that about 67 percent of pregnant women in the US decide to have an abortion if their unborn has trisomy 21.

Why have an abortion?

Why have an abortion?

Each year approximately 3,000 to 5,000 children are born with the chromosome disorder, according to figures from the World Health Organization (WHO). Among the effects are hearing, heart and intestinal problems.

Parents may worry about life with a child with Down syndrome, says Florian Steger, a medical ethicist at Ulm University. They may worry about how to raise their child or the stigma in society. Steger says it's time for society to act.

"We mustn't leave mothers alone and without help," he says.

Sascha's world: living with Down Syndrome

Life expectancy among people with Down syndrome has risen dramatically in the past decades. The WHO says about 80 percent of people with Down syndrome now live to their 50th birthday and beyond. But some parents may still worry about who will look after their child when they themselves get older or die.

Steger says it is every woman's right to decide whether to screen for trisomy 21, and whether she wants an abortion.

But he says it's also a woman's responsibility to get properly informed so that she can make her own decision, "without blindly following the advice of others, whether it's a doctor's, her mother's, or from someone else."

De Graaf also says he hopes more people will get better informed about Down syndrome and life with a child born with it.

"Down syndrome is less of a disaster than people think it is," he says. "I would not consider it a reason for abortion." But, he says, it's a decision that people have to be able to make for themselves.

The older you get

The chance of having a child with Down syndrome is about 1 in 200.

Older mothers - beyond 30 or even 35 years of age - have a much higher risk than younger mothers.

According to the US Centers for Disease Control and Prevention , the number of babies born with Down syndrome between 1979 and 2003 increased by about 30 percent.

This is probably due to the fact that many women are having babies later in life.

And perhaps that is why more women feel a need to screen for trisomy 21, and that as a result, more are also having abortions.

And, yes, it has to be said, a child with Down syndrome is a lot of work, says Gert de Graaf.

"Life is different with a trisomy 21 child," he says.