What's So Scary About Down Syndrome?


Recently I read a story about a baby boy born in 1982, known to us only as Baby Doe. Interestingly, this baby who had no name quickly became the center of national debate over the value of human life.

In the court of public opinion, some found this newborn baby boy to be guilty of two grave offenses. First, he had Down syndrome. Somehow he had managed to breeze through pregnancy without being detected, thus taking away his parents’ ability to have an abortion. Second, he was born with a (surgically correctable) condition known as tracheoesophagael fistula. Yet while a nearby hospital and its medical team were ready and willing to perform surgery on him, Baby Doe’s parents chose instead to follow the archaic and biased advice of the mother’s obstetrician… and they did nothing.

This tragic story continued with the hospital fighting (and losing) for the chance to provide life-saving measures, many families coming forward with a desire to adopt Baby Doe, and a state child protective services investigation into the situation. In the end, medical pleas, legal processes and state intervention all failed Baby Doe. He lost his life just six days after birth because he was left alone with no sustenance. The cause of death was recorded as “chemical pneumonia, due to the regurgitation of his own stomach acid.”

While the story of Baby Doe’s life and death is, to many, heartbreaking and unimaginable, the reality of the injustices he faced are not all that uncommon. Though his story took place some 35 years ago, I’m afraid that in many ways, the suppression and annihilation of people with Down syndrome still persists even today. On the heels of reading Baby Doe’s story for the first time, I read another person’s story just a couple of days later. This mother’s story is the story of so many others… a prenatal suspicion or diagnosis of Down syndrome turned into pressure from one or more medical professionals to simply abort the baby and try again next time. It happens all the time (you can read many other mothers’ diagnosis stories here).

As I recall the many stories I’ve read or heard over the years, I can’t help but ask this question: What is the big deal about Down syndrome, anyway?

The prenatal threat against those with Down syndrome has never been greater as prenatal tests become more and more accurate. Furthermore, some medical and “ethical” scholars continue to argue not only for the abortion of fetuses suspected or diagnosed with Down syndrome prenatally, but for infanticide of those who receive a birth diagnosis. Yes, they are arguing for the legal right to kill babies born with Down syndrome, and other disabilities as well.

In many ways, these assaults are working, and the population of people with Down syndrome continues to decrease as the years go by. But why?

What’s so dangerous about Down syndrome?

The other day I was thinking out loud and questioning why our world seems so dead-set on eliminating people like our daughter. My husband listened to my rhetorical questions and offered his opinion: “Because it’s not easy. Parenting a child with Down syndrome takes a lot of work.” And while I wasn’t looking for an answer from him per se, I believe his answer exposed the truth about why some in our world want to wipe Down syndrome from our midst: fear.

Facing a reality of Down syndrome exposes our fears and forces us to recognize our vulnerabilities. We fear “hard,” so we run from it instead. We try to make it disappear. We fear Down syndrome will take away from our lives, destroy our normal, ruin our hopes and dreams. Fear drives this social war on Down syndrome, yet we fail to realize what we are trading our fears for in the process.

We are so busy running from pain, we forget the beauty that can come out of hardship. Nature reminds us of this truth, though. Even in the most barren desert, a flower still blooms. Even in a land devastated by volcanic activity, luscious vegetation will emerge once more. Beauty from ashes. Life from death.

What’s so dangerous about Down syndrome? I think we have it all wrong; we are fearing the wrong things.

I submit that the most dangerous threat Down syndrome poses to us as a society and as individuals is that it can enable us to become better people. Down syndrome threatens our devotion to self and reminds us that pursuit of personal pleasures leads to an empty life. A life well-lived is a life in which the needs of others are put before our own.

I will be the first to admit I grieved deeply over my daughter’s prenatal screening of Down syndrome. In fact, it was one of the darkest and most painful seasons of my life, and it led to an extremely difficult pregnancy, a nine-week stay in the hospital, and many days in my pregnancy of praying that the inevitable would not be true. At one time, I feared having a child with Down syndrome would mean the end of my world.

I don’t regret for one second the grief I felt and the heartache I have endured in different seasons of this surprising twist to our journey. We did not ask for Down syndrome, and the grief has been a normal process in unexpected and unanticipated life circumstances. But I also don’t believe the grief I have experienced in any way minimizes or takes away from the value of our daughter Alisa’s life. I will never accept that the detour Down syndrome brought to my original life plans would have justified killing Alisa, prenatally or just after birth.

Alisa has Down syndrome, but she is so much more than the many misconceptions and misled beliefs our world still holds about people with Down syndrome. She is not “a blob,” as the obstetrician of Baby Doe’s mom predicted he most certainly would be. She is not “an unbearable burden on the family and on society as a whole,” as is conjectured in this journal’s publication. She is not suffering, and she poses no threat to those who come into contact with her. But even if she was more medically fragile, even if she did require even more of my time, energy and sacrifice, I believe we should never compromise the value of human life for the sake of our own fears.

In the proverbial storms of our lives, if we trade our fears for comfort and pleasure, we lose out on the character, the strength, and the beauty that can emerge when a storm is weathered. After all, diamonds aren’t formed in easy conditions or safe environments. If we run from pain and numb our senses to the grief that accompanies “hard,” we miss opportunities to love and to give and to make this world a better place, even if it means making just one life better. Parenting a child with Down syndrome is not always easy, yes, but parenting any child is not always easy. Life is not easy!

Facing a reality of Down syndrome does not have to be the death sentence the world often tries to convince us it is. While Down syndrome reminds us that life does not always go according to our plans, it can also teach us that the real purpose of life is not in getting what we want but in emerging from the unexpected twists and turns of life as people of character, integrity, and strength. People with Down syndrome demonstrate to us that the pace of life does not have to be fast and furious. We do not have to look, behave, and achieve the way the world pressures us to. Human diversity in all of its many forms is a beautiful thing.

We fear the unknowns of Down syndrome, and we believe it is the person with Down syndrome who is somehow lacking, unworthy, too different to be given the same respect as other human beings. Yet I have found it is not my child with Down syndrome who has needed to change, but me. It is not my daughter who has Down syndrome who was lacking, but me.

What’s so dangerous about Down syndrome? When Down syndrome touches your life, you cannot remain the same person you once were. Yet if only we would all but walk into the “hard” and embrace the challenge, I believe we would find the change Down syndrome threatened to bring was, all along, something we shouldn’t have feared at all…

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