Wrongful Deaths and Rightful Lives - screening for Down syndrome

As I was "rabbit chasing" down the internet infoway I came across an article entitled "Wrongful Deaths and Rightful Lives - screening for Down syndrome." It spurred me to finally start blogging. So here's a little of my story.

Prenatal screening for Down syndrome -- that was just getting started when I found out I was pregnant with my second child. I remember the doctor giving me the brochure. I remember reading the accuracy rates and how iffy they actually were and how if you really wanted to know you would have to do another test and actually, that test wasn't that accurate, and you would have to do another test....... until amnio was really the only way to know.......... and THAT test had a chance of harming the baby! I remember thinking how that didn't make any sense to me. So I didn't do it. And I'm glad I didn't. It didn't really matter to me whether the baby had Down syndrome and it still doesn't (and didn't with the next four pregnancies either) and I DO have a child with Down syndrome and I absolutely love her to pieces!

Is she perfect? No. Do I like what she does all the time? No. Does she always obey? No. Does she always get along with her siblings? No. Does she sometimes cause me trouble, inconvenience, heartache, grief? Yes. Are these questions true about my other 5 kids? A DEFINITE YES! (Sorry kids.)

Has she enriched my life? Yes. Have I learned new things because of her? Yes. Have I come to value each person in my life more? Yes. Have I met many wonderful people because of her? Yes. Yes. Yes. Yes!!! And is the same true for my other children? A DEFINITE YES! (See I love you guys, too!)

Having a child with Down syndrome is more like a "normal" experience than most people would think and for me a most enriching, intriguing, life enhancing journey that I am forever grateful for!

What I really want to do is launch out into a tirade against the medical profession and its push for prenatal screening that particularly singles out Down syndrome as something to be avoided at all costs; for its pressure on moms to do the "right thing" and find out so that a child with this "horrendous" disability won't be inflicted on themselves and the world (8 out of 10 babies diagnosed in utero with Down syndrome are aborted); for its lack of knowledge and interest on getting the real story on how a disability actually affects a family; for not talking enough about the dangers of intrusive testing (amnio and CVS) to a "normal baby".......... but, instead............


Please, please, please know that a diagnosis of Down syndrome is NOT the end of the world -- it's a new beginning, a new journey, a new awareness...........


If you know someone going through the pain of prenatal screening and its worries, questions, "what if's" and a possible diagnosis of Down syndrome............. reassure them, get information from parent support groups, talk to other parents................

Here is a link to the original article: http://www.down-syndrome.org/editorials/2087/

Here is a link to a very candid essay by a mom of a son with Down syndrome regarding her experience with prenatal testing: http://www.down-syndrome.org/essays/2013/