Thursday, July 18, 2013

Ten Percent? (Updated 4/15/15 to include new information)

The original is copied from a post I did on Facebook four years ago.  I have edited it to include up to date information.  New information in bold text, below. ~ ADH

I read a statistic the other day that made me very sad. 90% of pregnant women who receive a diagnosis of Down Syndrome for their fetuses choose to abort. It’s a statistic that I had read before, but, now it hurt even more because of the chance that soon, that number may reach almost 100% because of earlier, less invasive testing and very little hands on knowledge of Down Syndrome on the part of doctors.

(New information has come to light and I think it is very important to share it.  Please see the studies here and here.   Brian Skotko puts the number at 74%...and that 74% only applies to pregnancies where the mother has chosen to have DIAGNOSTIC testing done.  I emphasize that word because the early blood tests are not diagnostic; they only give a statistical number.  Women with elevated risk according to these tests can choose to have a diagnostic test, such as chorionic villus sampling or amniocentesis done to get a true diagnosis.

Therefore, it is FALSE to claim that 90% of babies with Down syndrome are not born (which seems to be the way people, including myself in the past, incorrectly interpret things).  The numbers vary depending on what studies you look at, but the bottom line is that 90% is nowhere near correct and further, when you look at the actual percentage of terminations in ALL Down syndrome pregnancies, not just that small number that have been subjected to diagnostic testing, the number is somewhere around 30%.  What a tremendous difference!  And what could this potentially mean to the woman getting this information today?  For me, it means the difference between feeling a part of a very small minority versus a rather large majority.

I think it is very important that these numbers be shared far and wide.

Here is a link to another post by Mark Leach who explains why this information is not all rainbows and unicorns.  He also breaks down the numbers really well; in a way even a math-challenged person like myself can (sort of) understand:  Mark's post.

It still remains to be seen what impact the early blood tests will have on these numbers, as more women could potentially opt for additional, diagnostic testing, but I find it heartening to know that 90% is not a true number, nor even close to it.)

Before you think you know where I am going with this, let me assure you that I am very pro-choice. I have no problem with abortion in general and I feel that prenatal testing is very helpful. It’s a good idea to know something about your child before they are born, just to eliminate a few of the unknowns, which are many.

The problem arises when you can learn so much about this potential life that it becomes nothing more than a series of cells; some coveted and some not-so-much. In some parts of the world, it is a defect to be born female. In some places, women have to be imported because the shortage is so great due to selectively eliminating the “wrong” sex prenatally. 

Let me repeat: in some places it is a defect to be born female.

In China, eugenics have been practiced by law since 1995. “Unfit” couples are forced into sterilization before they are allowed to marry and abortion due to “undesirable” attributes in a fetus are sky high. Proponents of China’s eugenics law state that the less money you have to spend on these “defective individuals”, the more there will be for those who can better “contribute”. When did love and sex and procreation and the messy human experience become all about money?

Does a quest for perfection make a society better? Did it make the Nazis better? Or do we look at them today as the absolute worst in mankind?
The problem with perfection is that everyone has a different opinion of what “perfect” is. I think Jason Statham is the height of perfection in a man; witty, charming, sexy, oh, I could go on. But, Jason Statham is also balding and kind of short. Does this make him less perfect? Not, in my eyes, it doesn’t.

I find men with pear shaped hips unattractive; ditto, for lack of a strong chin. But, if every man looked like either The Rock or Jason Statham, (both perfect men as far as I am concerned) how would I know what “attractive” means to me?

I have a twelve year old son with Down Syndrome. Every time I read one of these statistics, it brings me back to my own decisions. I honestly ask myself “if I knew then, what I know now, would I change anything?” and I honestly answer “Hell, if I knew then what I know now, I might not have any kids at all!” and I would be telling the truth.

Kids are messy. They rob you of your youth, your looks, precious sleep and that space that you were saving for your library. They puke on your leather couch. They fart in front of people you want to impress. They burp loudly at the quietest moment in the movie, in a crowded theater. Boys pee near the toilet and when it does actually reach the bowl, it usually hits the seat first; the seat you sit on in the middle of the night without looking…GAH!!!

Kids are expensive! Has anyone seen how much it costs to fit two preteen and one teenaged boy with shoes? Holy crap! Forget about that romantic Greek isle cruise you’ve been saving for; it’s all going to go to Chuck Taylor‘s. Parents to be? Forget about college and start buying shoes on sale now!!! Believe me, those Chuck Taylor’s will still be in style and if they aren’t, it will be a great lesson in managing disappointment.

Kids also fill you with pride. Sometimes that pride comes from finally taking off the training wheels so they can wobble (on their own!) down the sidewalk. Sometimes it comes in the form of a letter from a teacher saying that your child is in the school spelling bee. Sometimes it is in the form of a wrestling pin or a game winning basket or goal. And sometimes, it is in the form of an understandable word at the age of four or taking a few steps at the age of three. For me, it comes, when the kids at school greet my Charles with a hug or a high five or a “what’s up, dude?”. It often comes at Special Olympics events where I cannot contain the happy tears.

Pride, like beauty, is in the eye of the beholder.

"People often say that 'beauty is in the eye of the beholder,' and I say that the most liberating thing about beauty is realizing that you are the beholder. This empowers us to find beauty in places where others have not dared to look, including inside ourselves."
 ~ Salma Hayek

I don't want to hear the argument about “eliminating suffering”. Who are you to judge? My kid isn’t suffering; not by a long shot. He is loved and loves life. He suffers no more or less than any other middle class kid in the U.S.

I guess my point is this: I don’t think that because something is scary, or messy, or overwhelming, or expensive, that it should be categorically eliminated. I don’t want to live in a world where difference is eliminated. If it were, we would be missing out on 90% of what makes life, life. If we bypass struggles and suffering, how will we know when we’ve reached our goals? And what beauty will we miss along the way?

Charles is now almost 16, in high school and still loves kitty cats, along with lifting weights and talking about girls.

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