A World Without Down syndrome?
In August 2017, after a CBS news crew traveled to Iceland, a report was released titled “Inside The Country Where Down Syndrome Is Disappearing”. Since the introduction of more advanced prenatal screening tests in the early 2000’s the vast majority of women in Iceland, almost 100%, who received a positive prenatal test for Trisomy 21, also known as Down syndrome, elected to terminate their pregnancy. On average, only 2 babies are born per year with Down syndrome in Iceland. Geneticist and founder of deCODE Genetics, Kari Stefansson, has studied nearly the entire Icelandic population’s DNA and has his own perspective on the advancements made in medical technology.
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. - Kari Stefansson
This report was however met with backlash in the United States. After the release of the CBS special report, American actress Patricia Heaton took to Twitter with the following: “Iceland isn’t actually eliminating Down syndrome. They’re just killing everybody that has it. Big difference. #Downsyndrome #abortion”.
The CBS report also led to the #lifeisbetterwithyou movement, started by Annie Reid and Diane Grover. As mothers of children with Down syndrome, they wanted to do something to combat the negative stereotypes and misconceptions surrounding Down syndrome. They came up with a positive message- #lifeisbetterwithyou- a 30 day campaign sharing the faces and lives of people with Down syndrome and the love, joy, and beauty they bring to the world. The campaign took off within days, spreading from Facebook to Twitter and Instagram, with hundreds of families sharing their photos and stories.
Advocates within the Down syndrome community realize the need for a more accurate picture of life with Down syndrome to be presented to the world. Negative stereotypes are prevalent, especially in the medical community. The majority of OB/GYN’s will recommend or even pressure their patients with a positive prenatal diagnosis of Down syndrome to have an abortion. Which sends the message that people with Down syndrome’s lives do not have as much meaning as those who do not have Down syndrome.
People on either side of the issue state that there is nothing wrong with the pursuit of having the healthiest child possible. But where does it stop?
Down syndrome is the most common genetic disorder. Despite the negative and inaccurate stereotypes, the overwhelming majority of individuals with Down syndrome state they are very satisfied and happy with their lives and have a wonderful quality of life. Over 98% of family members of people with Down syndrome state that their own lives are better and they are better people because of their loved one with Down syndrome. So why does society cling to a belief that this entire population should be eliminated? And where is the line in the sand with regards to aborting based solely on a suspected disability? What if your child will be deaf? What if he or she has a cleft palate, which is easily repaired by surgery but leaves a scar? Do they not deserve to live either?
It hasn’t been that long ago since the Baby Doe case in Bloomington, Indiana. In 1982 a child was born at Bloomington Hospital with 2 conditions, Down syndrome and a tracheoesophageal fistula, which is a condition in which there is an abnormal connection in one or more places between the esophagus (the tube that leads from the throat to the stomach) and the trachea (the tube that leads from the throat to the windpipe and lungs). The condition makes eating food orally impossible. In Baby Doe’s case the defect could be correctable with surgery, with a nearby hospital that would perform the procedure and had a good overall prognosis. Even if surgery had not been an option, Baby Doe was still capable of receiving food and water intravenously. But instead of performing the surgery immediately, Baby Doe’s obstetrician advised the parent that instead of surgery they could simply do nothing, which would result in their son dying from dehydration or starvation after a few days. The doctor believed that because Baby Doe had Down syndrome his life was not worth living, and it would be in the family’s best interest to have their son die. The family agreed.
In an article with The Chicago Tribune, the doctor implied that his own personal experience of witnessing a family member with a child with disabilities influenced his view that Baby Doe’s life wasn’t valuable. “I believe there are things that are worse than having [such] a child die. And one of them is that it might live.” Despite numerous efforts and the attempts of at least 10 couples to try and adopt the child and prevent his imminent death, the court found that “Mr. & Mrs. Doe, after having been fully informed of the opinion of two sets of physicians have the right to choose a medically recommended course of treatment for their child in the present circumstances.” Some of the nurses and caregivers of Baby Doe required psychological therapy, because of the sense of guilt they carried in the aftermath. Baby Doe did not have an “easy” or “peaceful” death. In his book, Playing God in the Nursery, Jeffrey Lyon described Baby Doe’s short life. By the fourth day, the baby boy
“was crying from hunger, and his lips were parched from dehydration. His ribs were sticking out, the result of respiratory strain caused by the tracheoesophageal fistula. That afternoon, when the stomach acid started corroding his lungs, he had began to spit blood.”
Baby Doe died 6 days after his birth, the cause of death being “chemical pneumonia, due to the regurgitation of his own stomach acid”. This atrocity occurred right here in America, only 37 years ago. If we do not remember and learn from the past as a society, we are doomed to repeat it.
Having a government that decides which lives are valuable and which are not indeed places us on a slippery slope. And despite how people may try to rationalize and justify it, it is still genocide. When Adolph Hitler first rose to power in pre-WWII Germany he did not tell everyone at his rallies his plan for concentration camps and plans to exterminate an entire population, over 6 million people. It was more gradual than that. It was more like a slow descent down a slippery slope. This process of screening people out, before they are even born, based solely upon a SUSPECTED disability is no better than the Nazi regime of WWII. How quickly we can forget the atrocities of the past.
Julian Quinones, Arijeta Lajka. “What Kind of Society Do You Want to Live In?’: Inside the Country Where Down Syndrome Is Disappearing.” CBS News, CBS Interactive, 14 Aug. 2017, www.cbsnews.com/news/down-syndrome-iceland/.
“Patricia Heaton: ‘Iceland Isn’t Eliminating Down Syndrome- They Are Just Killing Everyone Who Has It.’.” America Magazine, 13 Dec. 2017, www.americamagazine.org/politics-society/2017/12/04/patricia-heaton-iceland-isnt-eliminating-down-syndrome-they-are-just.
Stumbo, Ellen. “Why This Hashtag Is Important If You Love Someone With Down Syndrome.” The Mighty, 27 Apr. 2019, www.themighty.com/2017/08/down-syndrome-hashtag-lifeisbetterwithyou/.
“A Life Not Worth Living?” Baby Doe Case, www.rtl.org/prolife_issues/BabyDoeCase.html.
Lyon, Jeff, and Jeff Lyon. “THE DEATH OF BABY DOE.”
Chicagotribune.com,4 Sept. 2018, www.chicagotribune.com/news/ct-xpm-1985-02-10-8501080761-story.html.
“Today Baby Doe Died.” Down Syndrome Prenatal Testing, 15 Apr 2019, www.downsyndromeprenataltesting.com/today-baby-doe-died/.
Lyon, Jeff. Playing God in the Nursery. W.W. Norton, 1986.
* Heather is also a contributing writer for The Mighty. You can follow her journey via her Facebook page by clicking on the link below.