Raising a Child with Down Syndrome

Yesterday I read “Down Syndrome Births Are Down in U.S.” at ABC News, which talks about the effects of the statistic that 80% of pregnant women who take the amnio and discover that their fetus has Down syndrome choose to terminate the pregnancy. The result is a huge decrease in births of babies with Down syndrome, which in turn, will affect funding for research on this syndrome and, perhaps, eventually affect laws.

There were a few things I was shocked by in reading this:

• Fear. People are actually afraid of having a baby with Down syndrome.  The mother in the article literally preferred her child have a heart defect rather than Down syndrome.  This makes me so sad!  I can tell you this: “fear” is tied to not understanding Down syndrome and not knowing people who have an extra chromosone, in addition to going by outmoded data.  It’s been decades since people with Down syndrome are typically committed to mental health institutions.
• Rush. Of course, aborting a fetus means you have a time consideration and  generally, you have a small window of time to decide.  I recall so clearly the emphasis made on genetic counseling to decide whether or not to have an amnio.  Genetic counseling teaches you the medical issues about fetuses with the conditions they can test for as well as the test.  What they don’t tell you is what those conditions mean; I’m gathering from the article that doctors often do not paint an optimistic picture of caring for and raising a child with this disability.

I’m writing this article to clear these issues up.

HEALTH
First of all, there is nothing more to fear with a child with Down syndrome* than any other child, excepting  if your child has a heart defect. This is fairly typical, however, keep in mind that the heart is one of the organs in the body that quite a lot is known about about and quite a lot can be done surgically and otherwise to fix problems.

Shortly after Amelia was born, we discovered that she had a tiny hole in her heart. In fact, her heart grew as the hole – the size of a pinpoint – grew, and in another area where she had issues, the growth of her heart acted as a kind of bandage over the hole.  She has not needed surgery or had any issues, although we did need to monitor her as a child and every 2 years she gets a sonogram.  Now, we do also have issues with sinuses, there is a slightly elevated chance of  leukemia and thyroid issues, and Amelia did not have hypotonia.  Still, children are not a guarantee and I just read that kids who have leukemia and Down syndrome have a better survival rate than kids who don’t have Down syndrome. Wow, so don’t make your chicken sick before they hatch…

ABILITIES & DISABILITIES
As you know, Amelia has learning disabilities.  While she is not academically up to the level of a typically developing 6 year old, she is not so far  behind that I can’t see a good future for her. I fully expect her to go to high school, and possibly, college.  More and more colleges are now trying to set up programs to help these youths become fully integrated students and members of society. I have no doubt that she will live on her own and be gainfully employed doing something she loves.  She may even marry!

Sure, we have to work a little harder and I may have to fight a bit more, and on any given day, the paperwork for my kids can be stunning.  But this is just part of being a good parent.  You don’t know what your kids will deal with, but for sure, they will deal with something and you may have to put on your boxing gloves and show up at the ring.

What I’ve gained: a beautiful, happy, infectiously ecstatic child, who loves and appreciate people and nature, who screams “mommy!” with peels of glee whenever she sees me, patience, advanced track on spirituality, gratitude, a better marriage.. really, I could go on and on.  I am glad that I never chose to abort that pregancy and I think many others would feel the same if they learned more about Down syndrome.  Or maybe I’m just a hopeless optimist, lol!

Now that you know a little, I encourage you to learn more, particularly if you know anyone getting an amnio or CVS, or anyone who has a fetus or child with this condition, or comment me with any questions, or ask a family who has a member with Down syndrome, or get out there and meet some of these wonderful people!  Here is a list of resources:

• Down Syndrome Myths & Truth (scroll down under Sarah Palin press release)
• Why The Abortion Rate for those with Down Syndrome is over 90%: Kristy at the wonderful Mosaic Moments shares her thoughts and argues for keeping the pregnancy.
• Down syndrome “typical” symptoms from WebMD.  Remember, every child is unique so these are not “guaranteed”.
• National Down Syndrome Congress site: we are ALL more alike than different!
• National Down Syndrome Society
• East Penn Down Syndrome Center for those located in and near Lehigh Valley and Allentown, PA

Share your resources, stories and questions in comments!

*Note that Amelia has Mosaic Down syndrome, which is very rare and slightly different, in which the continuum of affected health, physical, and mental issues may be somewhat to the higher end of functioning.