A Clash of Cultures

In early February 2015 a story appeared that highlighted the radical difference in the way Down syndrome is perceived in various countries, or cultures, of the world. The story was so jarring that it evoked strong reactions from the public, similar to the way the Baby Gammy story had a few months earlier – that was the story of twins born to a surrogate in Thailand on behalf of an Australian couple. One of the twins, Gammy, was born with Down syndrome and was rejected by his Australian “parents,” who wouldn’t accept the child because of his disability.

In this newest story, a little boy named Leo was born in Armenia on January 21st to an Armenian mother and a father from New Zealand. The father described the birth by saying,

”This pediatrician walks out of the room with a little bundle -- that was Leo… She had his face covered up and hospital authorities wouldn't let me see him or my wife. When the doctor came out, he said 'there’s a real problem with your son.'”

The "problem" was that Leo was born with Down syndrome. For those not familiar with the story, the father claims that he wanted to keep the child and take him back to New Zealand, but his wife gave him an ultimatum: If he kept the child she would divorce him. The mother's story is a bit different than the father's, so it's hard to know the true circumstances, but the details have little bearing on the point of the story: Baby Leo was caught in a conflict of cultures regarding how people with Down syndrome are perceived, and whether they are accepted or rejected by the culture into which they are born.

The harshness of attitudes toward children born with Down syndrome is what captured the public's attention. Like other countries of the former Soviet block, in Armenia there are few support services for those with disabilities. It is typical that children born with Down syndrome are shuttled away from their families at birth and raised in poor conditions in orphanages. As the mother said,

“The first thing that came to my mind after the diagnosis was that I don’t want my child to live in a country where certain stereotypes dominate the lives of people with DS and (they have) no opportunities at all.”

The doctors who assisted in Leo's birth reinforced this cultural prejudice when they presented Leo to his father with his face covered, and then asked the mother if she was going to keep him or not. For the father, the idea of abandoning his child was abhorrent. The mother, knowing Armenian cultural attitudes, knew how difficult life for her child would be and was willing to give up both the child AND her husband.

This story took place far from the United States, but similar decisions are tragically made here every day. In spite of the overwhelming joy reported by families who have children with Down syndrome, a majority of those conceived with trisomy 21 in the U.S., U.K., France, Australia, and many other countries, are never born because of lingering prejudicial attitudes against them.

Often quoted research by Dr. Brian Skotko, a medical geneticist and Associate Director of the Down Syndrome Clinic at Massachusetts General Hospital, shows that families who have children with Down syndrome are overwhelmingly happy with their lives, that siblings are proud of their brother or sister with Down syndrome, and that the individuals themselves who are living with Down syndrome are happy.

In contrast to the lived experiences of families reported by Dr. Skotko, recent research by Dr. Brianna Nelson Goff and her colleagues reveals that 1 in 4 women report their medical provider was “insistent” they terminate their pregnancy after a positive prenatal diagnosis of Down syndrome. They also report that women’s negative experiences following a prenatal diagnosis outweigh positive ones 2.5 to 1!

Doesn’t this reveal a troubling cultural disconnect? Are those doctors who are insistent that women terminate their pregnancy listening to, and learning from family’s real life experiences? It would seem they are not.

The increasing threat posed by new early prenatal screening tests is very real and adds fuel to this cultural disconnect. An exposé published by the New England Center for Investigative Reporting in December 2014 showed that 22 out of 356 women chose to terminate a pregnancy based upon the result of a prenatal screening test alone, without confirming the result of the test with a follow up amniocentesis, the protocol recommended by the tests’ manufacturers, and the American College of Obstetricians and Gynecologists. Their research further revealed that three women who had chosen to abort their child after a prenatal screening test had tragically aborted a child with no chromosomal abnormality!

In the U.S., the decision to keep a child or not is really no different than in former Soviet states. Rather than shuttle a child off to an institution after birth, a significant number of medical providers (about 25%) are pressuring women to abort their baby following a positive prenatal diagnosis. Stereotypes dominate the lives of people with Down syndrome in Armenia – and stereotypes influence the advice medical providers give their patients, and subsequently the decision many of those patients make!

March 21 is World Down Syndrome Day – a global awareness day intended to draw attention to those living with Down syndrome, and a day set aside for advocates to speak up for the rights of those living with Down syndrome, their needs, and the special gifts they bring to their families and community.

In some areas of the world, attitudes toward Down syndrome remain blatantly harsh, and the suffering these individuals face is unbearable. We cannot forget, though, that a majority of individuals conceived with Down syndrome in the U.S., and many other countries, are never born because of lingering prejudicial attitudes that are largely perpetuated by the medical community. We can't let World Down Syndrome Day pass without speaking out against this horrible injustice, or as Jerome Lejeune called it, "Chromosomal Racism."

Jerome Lejeune was renown for his compassion for those with disabilities, and was very aware of the attitudes against these individuals among his colleagues in the medical community. He famously stated:

“Again and again we see this absolute misconception of trying to defeat a disease by eliminating the patient! It's ridiculous to stand beside a patient and solemnly say, “Who is this upstart who refuses to be cured? How dare he resist our art? Let's get rid of him!” Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patient's side, always.”

On World Down Syndrome Day, as we ponder the unique gifts those living with Down syndrome bring to the world, we might also consider another quote of Dr. Lejeune:

“I will go back to the Spartans, the only ones to eliminate newborns that they believed would be unable to bear arms or beget future soldiers. Sparta was the only Greek city to practice this kind of eugenics, this systematic elimination. And nothing remains of it: It has left us not a single poet, not a single musician, not even a ruin! Sparta is the only Greek city that contributed nothing to humanity! Is that a coincidence or is there a direct connection? Geneticists wonder, “Did they turn stupid because they killed their future thinkers and artists when they killed their less-than-beautiful children?”

World Down Syndrome Day is about those living with Down syndrome, but it is also a day that should serve as a mirror to reflect on how world cultures accept or reject those conceived with Down syndrome. In the U.S. and many other countries as well, the reflection we see is far from perfect. World Down Syndrome Day reminds us once again of an unbearable injustice that continues against those conceived with Down syndrome and their families that are often torn apart when they face pressure to end a pregnancy following a prenatal diagnosis. This day sounds a call to heal and perfect the image we see so that all human cultures radiate love, acceptance, and support for those living with Down syndrome as well as other genetic differences.