Down Syndrome and Abortion: the 800 lb Gorilla in the Room…

With the recently released news that a new, non-invasive prenatal test will soon be available to determine if a fetus has Down syndrome, I thought I’d rant a little bit over a topic that is near and dear to my heart.

As mentioned in my last discussion on abortion, my husband and I disagree on this issue.  Terminating a pregnancy based on the fact that he or she has Down syndrome smacks of eugenics to me, but what really hurts me is when I see this issue discussed in the news and the dozens of comments I see discussing cost as a good reason to abort – not just, mind you, cost for the family, but the cost to our welfare system.  (Given that so many seem intent on the idea of eliminating it, you’d think these groups would be on the same side.)

I do know that when I hear, “You should just terminate that Down syndrome baby to put her out of her misery,” I get angry.  Who’s to say the value of life?  Do people with Down syndrome or Mosaic Down syndrome live a worthwhile life, even with their disability and medical conditions?  Does an uncertain future invalidate the essense of life? Do any of us know how and where our later years will play out, like my mom, who had Alzheimer’s and spent the last few years of her life drugged up in a facility?

Let me right now give you the skinny on what Down syndrome is, and what it can mean, honestly:

• Possible earning disability from mild to severe
• Multiple possible medical conditions, including serious heart defects, gastrointestinal disorders, chronic and serious conditions
• Increased chance of thyroid problems
• Increased chance of leukemia
• Allergies, poor vision, sinus infections, ear infections, gum disorders – pretty much stuff I’ve already got most of, so no biggie IMO
• Possible sensory issues
• Possible autism
• High possibility (or so I’m led to believe) of Alzheimer’s, possible early-onset

That’s what I know, what I can think of off the top of my head, and I discuss it more in-depth here.  That’s what we live with.  What else do I know?

• Some people with Down syndrome get married
• Some go to college or become entrepreneurs
• Some go on to become self-advocates and advocates for others
• Some have careers, by which I mean the  traditional view of a satisfying career
• Some live on their own

I didn’t know any of that a few years ago.  And?  Is there more?

There is hope that people with Down syndrome and Mosaic Down syndrome can improve (biomedicine rocks!).  Check out these:

• Trisomy 21 Research is what it says it is, including info about TNI a protocol
• Changing Minds
• Down Syndrome Options
• Down Syndrome: A Day to Day Guide

Know what else I know?  Life wouldn’t be this fabulous without this kid:

Now it’s your choice, if you’re a woman, to decide what to do with that unwanted pregnancy. Most people probably have a list of what they consider is or is not a valid reason to keep a pregnancy. You also have a right to be educated beforehand, by which I don’t mean some wicked, invasive, stupid procedure to prove to you that a fetus is indeed a fetus, but to get the facts about Down syndrome (and Mosaic Down syndrome), what it may (or may not) mean for you and your child, and to have hope and a happy reality rather than the dismal future that I saw when I got Amelia’s diagnosis.

Doctors need to stop giving the news of Down syndrome like it’s a death sentence.  It’s a challenge, that’s true,  but in honor of World Down Syndrome Day, let’s consider that maybe this kind of pregnancy ain’t a mistake, but a joyful noise – and in this house, she makes a LOT of joyful noises!!  peace out everyone…

Resources about Down syndrome:

• National Association for Down Syndrome
• National Down Syndrome Congress
• International Mosaic Down Syndrome Association

Have I missed any?  Let me know in the comments!