In the United States, the voice of the Down syndrome community has grown exponentially louder since the passing of the Americans with Disabilities Act in 1990. They are being recognized for their accomplishments and making unprecedented strides in mainstream society. Just recently, Mikayla Holmgren, became the first Miss USA contestant with Down syndrome. Madeline Stuart also became one of the first Down syndrome models to walk in New York Fashion Week. While their voice and visibility may be growing louder at home, it’s dimming elsewhere.
According to the CDC, there are about 6,000 babies born with Down syndrome in the United States every year. Despite sociopolitical gains, this number represents a decrease in actual birth compared to previous years. Because of prenatal screening tests, about 67 percent of Down syndrome-positive pregnancies end in abortion in the United States. This is relatively low, compared to nations in Europe.
France has a 77 percent termination rate for pregnancies diagnosed Down syndrome. The United Kingdom has a 90 percent termination rate, and Denmark has a 98 percent termination rate. But Iceland has a 100 percent termination rate for Down syndrome-diagnosed pregnancies. Icelandic law permits late-term abortions – after 16 weeks – if the child has a deformity. Down syndrome falls under this category.
There are still children with Down syndrome born in Iceland. Out of a population of 330,000 people, there are about two Down syndrome babies born annually. This is partially due to testing inaccuracies. “Some were low risk in our screening test, so we didn’t find them in our screening,” Hulda Hjartardottir, head of Prenatal Diagnosis Unit at Landspitali University Hospital, told CBSN News: On Assignment.
In Iceland, the law states that medical providers should inform expectant mothers about prenatal screening tests. About 80 to 85 percent of pregnant women choose to take the test. The test factors in a blood sample, the mother’s age and an ultrasound to determine the likelihood of a fetus have Down syndrome. The test is 85 percent accurate.
While it’s mandatory to inform the mothers about the testing options, Hjartardottir says that they do not try to sway the women’s opinion in either way. “We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you towards a certain direction,” she said.
“It was not pressure, but they told me that most women did it,” said Berthori Einarsdottir, a pregnant woman who opted for the prenatal screening. “It did affect me maybe.”
But, there are some who believe that the Icelandic government and medical community may be interfering too much in the reproductive choices of its citizens. "My understanding is that we have basically eradicated, almost, Down syndrome from our society -- that there is hardly ever a child with Down syndrome in Iceland anymore," said Kari Stefansson, the founder of deCODE Genetics. "It reflects a relatively heavy-handed genetic counseling," he continued. "And I don't think that heavy-handed genetic counseling is desirable. … You're having impact on decisions that are not medical, in a way."
The 100 percent termination rate does raise ethical issues. People have been liking what is happening in Iceland to eugenics. People are wondering if it is morally right to get to pick and choose who gets to live based on a disability. Some question where the line should be drawn.
In today’s world, people with Down syndrome have a better chance at living a long healthy life compared to half a century ago. According to the CDC, in 1960, the average life expectancy for a person with Down syndrome was just 10 years old. In 2007, the average life expectancy was 47 years old. Today, the average is around 60.
Following the story, many people spoke out against the issue on social media and shared their own experiences with people with Down syndrome. “My brother is a low functioning downsie,” this person captioned this photo. “He used to love to hold babies but it’s rare someone lets him now. My wife and I let him hold our baby today and here is his look when we gave her to him and then the way he held her without movement for 5 minutes. I almost cried.”
But, many people also came out and said that if they had prenatal test reveal Down syndrome, they would terminate the pregnancy. “I have two downs in my family on my father’s side and most of my family after strongly against this sort of testing,” said another commentator. “I on the other hand feel that we need to give the children entering this world the best chance at a fruitful and happy life and would terminate a pregnancy should one test positive. I actually see it as somewhat cruel to carry a child to term when known that the child has down or another genetic abnormality that will put them at a major disadvantage.”
But one must question whether the outrage over Iceland’s 100 percent termination is just a pro-life vs. pro-choice issue. The people who willingly make the decision to give birth to an infant with the full knowledge of their down syndrome diagnosis likely are already against abortion. Christian Right lobbyist groups have much more sway on the government in the United States, than they do in Northern European nations like Iceland and Denmark. The country is nearly split on the issue of pro-life vs. pro-choice. And we have people in the highest office of power who oppose abortion.
Sarah Palin, former U.S. candidate for Vice President and vocal pro-lifer, has a son with Down syndrome. “Yes, we face extra fears and challenges, but our children are a blessing, and the rest of the world is missing out in not knowing this,” Palin once said.
But Iceland, and much of Northern Europe operate under a different set of mores when it comes to the issue of abortion. In Iceland, the church has not taken a definitive stance for or against abortion. There is a small group opposed to it, but they have no real effect on public opinion, said Agnes M. Sigurðardóttir, first female bishop of the church of Iceland.
At Landspitali Hospital, Helga Sol Olafsdottir counsels women whose prenatal test found a chromosomal abnormality. “This is your life – you have the right to choose how your life will look like,” is what Helga tells women contemplating termination.
Helga told CBSN correspondent Elaine Quijano that sometimes the women wish to see the fetus after it was aborted, so they could say goodbye. She even showed her a prayer card that had a fetus’ footprints imprinted on it, including their weight and the day of the abortion. Quijano noted that might seem strange to pro-lifers in America, because to them abortion is murder.
"We don't look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family,” Helga responded. “ And I think that is more right than seeing it as a murder -- that's so black and white. Life isn't black and white. Life is grey."
Someone Advocating For Down Syndrome Rights In Iceland
There’s one woman in Iceland who wouldn’t change one thing about her daughter, even though her birth was unexpected. At 40 years old, Thordis Ingadottir was pregnant with her third child and she opted for the prenatal screening. The test showed that she was highly unlikely to have a child with Down syndrome. So, when her daughter Agusta was born in 2009, she was obviously shocked to discover her child did in fact have Down syndrome. Now Thordis is a Down syndrome advocate and just hopes that her daughter can live a normal life.
“I will hope that she will be fully integrated on her own terms in this society. That’s my dream,” Thordis said. “Isn’t that the basic needs of life?”