Thursday, June 12, 2008

New Testing in the Down Syndrome World {Grr}

There's a new non-invasive prenatal test that is supposed to be 100% accurate in diagnosing unborn babies with Down syndrome. It is said to have zero false-positives like the current non-invasive testing options. When the average Joe hears this, they think of how far medicine is coming and how wonderful it is that parents can know earlier that their child may have Down syndrome.

However, being someone who knows that 95% of prenatally diagnosed babies with Down syndrome are ABORTED, and being someone who knows that physicians usually deliver this news with "I'm so very sorry" and go right into the abortion option, then I am someone who is not very excited about "medical advancement".

I know this may sound dramatic, but there is a passive-aggressive holocaust going on in our country against people with disabilities. It is politically INCORRECT to treat a person with disabilities cruely, but it is very accepted to choose to kill a child only because they are disabled. I am very sad of this "advancement" in medicine and hope that it will be countered with physicians delivering the diagnosis in accurate, positive and appropriate manners. There is no standard of care on how a doctor is supposed to deliver this news and too many times, parents are getting worse case scenarios explained to them. You wouldn't believe how many parents I know were told "your child may never walk or talk and will be retarded". What about all of the good that comes with having a child with Down syndrome? I emailed a friend today that I think every parent should know the love of parenting a child with Down syndrome, and I mean that with all my heart!

{Wonderfully and lovingly plagerized from my friend, McKenna}


  1. I'm over here, too! I'm going to start charging you. ;) I get very frustrated when I think about the implications of this testing. Now, 99.9% of our sweet babies will be aborted. What does that say about Darah and Payton to our society? Are insurance companies going to start denying children who have issues that were diagnosed prenatally and could have been aborted. I just hope docs give this news lovingly and appropriately. I'm about to do a follow up post on this because I've been thinking so much about it...stay tuned!

  2. I completely agree with you! I knew when we were trying to conceive my youngest that the risk of DS was increased, but I didn't view that as a negative. When the time came for the tetra screen, I told my doctor I didn't want it. She convinced me that I should have it, if for no other reason, for spina bifida, since intrauterine surgery can make a huge difference for those kids. Since a dear friend has a precious daughter who walks and plays thanks to such surgery, I agreed. When the results came in, the doctor walked into the room and announced, "Your test was positive for Down Syndrome. We need to get you scheduled for a Level 2 ultrasound as soon as possible. You're running out of time." Thankfully, I had done my research ahead of time and knew how terribly unpredictable and unreliable the test was for DS. I began to ask her what "positive" meant. She eventually admitted that it was basically a mathematic probability result and that, at my age, I was guaranteed to test positive for that reason alone.

    I had the Level 2 ultrasound with the idea that if DS was confirmed, we could begin preparing for it. Even after all measurements and tests indicated no DS, the neonatologist kept pushing for amniocentesis. I finally told him flat-out that the result wouldn't matter, I would not terminate the pregnancy, and it wasn't worth risking the baby at all to have the test.

    It still makes me sick to think about how quick the medical community is to rush to assume that a baby should be aborted. It was highly offensive to me that they felt equipped to decide for me that my own convenience was worth more than my child's life. It infuriates me to realize that there are less-informed parents who trust the doctor's "expert" opinion without question.

    I know that there are wonderful doctors out there who do the right thing by there patients, but I wonder how many babies lost their lives because our society feels it has the right to label a child as worthless because of a disability, whatever disability that may be.

    Your precious family is proof that these angels contribute as much as, if not more than, the rest of us!