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Iceland Practically Eliminates Down Syndrome and I'm Horrified

Photograph by Twenty20

Back in August, CBS News reported what appeared to be magnificent news out of Iceland.

The Nordic country claims to have almost eradicated Down syndrome. In fact, just last year, only one or two babies were born with a special 21st chromosome. But this "eradication" is far from a cure. Rather, Iceland's medical community has provided prenatal tests with only 85 percent accuracy and then encouraged the termination of unborn children through "heavy-handed genetic counseling" when Down syndrome is suspected, according to geneticist Kari Stefansson.

To applaud Iceland's efforts is not only horrific, it's a blatant act of eugenics—something the Nazis prided themselves on.

I don't pretend to understand the worry, devastation and weighty decision of receiving a Down syndrome diagnosis. One of my children has undergone genetic testing prompted by a syndrome marker, but that doesn't come close to comparing, especially since our concern was unfounded. I suspect though, that on the brink of life-changing news, Icelandic mothers and fathers feel pressure to "save" their children from a life filled with challenges sparked by Down syndrome characteristics.

But do children born with Down syndrome truly suffer? Do their parents?

Callie, now a mother of three, learned the night of her firstborn daughter’s birth that she had Down syndrome. Although their road thus far has been speckled with heart surgery, therapies and advocacy for inclusion in school and society, at age 7, Mia is thriving. She has made many amazing friends who accept, love and include her, and she is an integral part of her community and school. Her mom, for one, is horrified by Iceland's twisted news.

"It's heartbreaking to me that we now have full societies that believe that kids like mine shouldn't exist. Those fears are often driven by old ways of thinking and misinformation," says Callie.

"When we open our hearts, minds and societies to people with Down syndrome, we learn that they are capable of leading fulfilling and joyful lives. The fact that 'medical advancements' and prenatal testing is leading to entire groups of people being eliminated ought to make us pause, reflect and take an honest look at the ramifications that will have. History has shown us that removing and marginalizing entire people groups based on generalizations about who has value and who doesn't has had devastating consequences."

Who is to say Down syndrome is worse and not worth a chance at life?

Instead, Callie believes that medical professionals need to be equipped to offer families receiving a prenatal diagnosis with accurate, balanced and up-to-date information about the potential of individuals with Down syndrome and all that they bring to their families and communities.

From a different perspective, Jessi couldn’t help but be brokenhearted by this controversial news. Her sister was born with Down syndrome in 1982 and although at the time she was only given a 50 percent chance of survival, her sister, Carol Ann, is alive and well today. Actually more than well, she is thriving. After all, Down syndrome isn't a fatal diagnosis. Today, the average life expectancy of a person with Down syndrome is 60.

"When you ask Carol Ann what she has dreams of doing with her life, she answers by saying, 'Being kind to people, opening doors for them, giving them hugs,'" shares Jessi. "She wants to travel, learn, explore new places and eat new foods—just like you and me. She thinks she's beautiful, fabulous and will tell you she has great hair ... My sister is full of pure joy. We have SO much to learn from ALL people who are different from us, and those who we classify as 'disabled' are no exception."

We all have marked imperfections. Causes for concern. Hiccups along our journey. Some are physically apparent, like Down syndrome. Others, are hidden demons that poison our souls, often causing more havoc than a syndrome or other medical diagnosis ever could. Who is to say Down syndrome is worse and not worth a chance at life?

Right now, Iceland is saying that. And proudly.

As a mother, I'm saddened. Broken over the loss of life. Iceland is not to be praised. They should be chastised for their efforts to promote eliminating a minority who matters a great deal, not only to their families, but to us all. People with Down syndrome deserve life and it's up to you and me to support, advocate and—perhaps most of all in today's scary society—protect them.

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