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Where In the World Is Down Syndrome Going?


I really should avoid drawing attention to this negative topic today, on my daughter’s 6th birthday. However, it is probably as good a day as any to discuss an issue that is weighing heavy on my heart.

During a few moments of free time this morning and afternoon, I shamelessly scrolled through Facebook to pass some time because…why not? Within a few swipes up, I realized nearly all my news feed was saturated with posts about CBS running a story on Iceland and the country’s extremely high termination rate for babies given a prenatal diagnosis of Down syndrome. It was probably more noticeable to me because a large majority of my friends on Facebook are fellow parents of a child with Down syndrome or self-advocates. Other countries like Australia, are part of a very similar discussion.

I would like to point out that CBS actually used this headline:

“Iceland Is On Pace To Virtually Eliminate Down Syndrome Through Abortion.”

On pace? How nice. Are they racing someone?

The idea of eradicating Down syndrome is a controversial subject, and obviously it does not sit well with me. My college roommate used to always say, “Variety is the spice of life, my friend.” While the phrase used to crack me up, she was absolutely right. Maybe she wasn’t referring to people as much as cheap beer selections. But seriously, since when do we as the human race get to decide a population of people no longer gets to exist or that those lives have no value? Most importantly, what are the reasons that justify this?

Six years ago today I sat in my hospital bed, isolating myself from reality while I digested the news of my daughter’s surprise birth diagnosis of Down syndrome.  Like many unsuspecting parents, our world was rocked.  When we were offered prenatal testing while I was pregnant, we declined knowing we would not change anything about our pregnancy, and that our arms and hearts would lovingly welcome our child.

 

Did that make receiving the diagnosis less difficult? No. Were we scared? Out of our minds. We had no idea what to expect. We were left with our own drawn up versions of what we thought Down syndrome was based on, what we could remember as kids — which was basically nothing.

Thankfully for us, our doctor was compassionate and kind. She was all we had at the moment to tell us anything about a baby born with an extra chromosome. While she did deliver some common, basic facts about Down syndrome, she did so in an unbiased and professional manner. She also reassured us our daughter would live a full and wonderful life with us, and that she was certain we would all be fine.

I can only imagine what these parents in Iceland are told their lives will be like with a child like mine, and how untrue what they’re told really is. Conflicting, outdated and biased opinions about Down syndrome as a whole. But you know what? It is happening right here, too. The horrific diagnosis stories I have been told by mothers here in the United States continue to blow my mind. I wonder if doctors and parents saw another side of Down syndrome — the human side — would the percentage decrease?

Truthfully, I can only speak from my perspective, and I am comfortable with my beliefs. While I am aware there may be other factors and circumstances such as additional complex medical situations that contribute to the decisions made, I wonder about the decisions made to terminate based solely on the diagnosis, and whether or not the information given is accurate and consistent.

Let’s not forget about the individuals with Down syndrome who are alive. What does this message of “eliminating Down syndrome” say to them? That they don’t matter either? It sure sounds that way.

Patricia Heaton for the win on twitter on Monday:

As parents, we spend a lot of time fighting and advocating for our children. Much to our dismay, we often seek to prove our children are capable of so much more than the limitations society places on them. We push for inclusion in school and the workplace, we fight for health care coverage and we encourage people to see their value. Now we fight for their right to walk on this earth.

You do not need a heart of gold to raise a child with Down syndrome. But you do need an open mind, the courage to embrace something unfamiliar and the belief that each life has value.

You know what? We are fine. Totally fine. My beautiful girl, charming and wicked smart, does not suffer from having Down syndrome. She never has. Her siblings have not suffered either. Anyone who has met her would tell you how awesome they think she is. Something prenatal testing cannot predict about anyone.

Is raising her easy? Not always. Raising my spirited 4-year-old without Down syndrome isn’t easy. Helping to parent a stepchild also isn’t easy. There are few things about parenting that come with ease. Period.

The hardest part about having a child with Down syndrome has not been the diagnosis itself; it’s the annoyance of having to explain she deserves to be here.

We are weeks away from sending our 6-year-old to her first day of first grade in a mainstream school, and today we celebrated her 6th birthday with her friends. In another part of the world, parents are being told their unborn child (who may or may not be born with Down syndrome) does not have a place here.

Where does this end? If Down syndrome is no more, who else will fall under the magnifying glass? While Iceland is “on pace” to “eliminate,” or kill, Down syndrome, I am on the fast track with a community of others who share the world is big enough for everyone — including people with Down syndrome.

That’s just my two cents on the matter.

Follow this journey at Dear Tessa.

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