Tag Archives | trisomy 18

He’s Not a Birth Defect.

I came across this article on the front page of MSN when I signed onto my laptop this afternoon: New Blood Test is Better At Finding Birth Defects, Study Finds.  The blood test isn’t really news anymore; it made its debut on the market a couple of years ago (I wrote about it here).  I guess what’s news is that now a study has been undertaken to determine just how accurate the new blood test is – and hot damn, it’s pretty accurate.  So, every pregnant woman in the US can now rest easy and know that she doesn’t have to give birth to a birth defect.

Well, actually, that’s not true.  Not until insurance companies can be convinced to routinely cover the cost of these blood tests, which apparently ranges from around $800 to $2,000 a pop.  And how will the companies that have developed these tests convince insurance companies to cover the cost?  By convincing insurance companies that it makes economic sense to cover the cost of the tests (you don’t really think your health insurance carrier gives a flying fudgesicle about your actual health, except to the extent that your actual health affects your insurance carrier’s bottom line, do you?).  And as much as the companies that have developed these tests tout them as providing “information” and “peace of mind,” the way they’re doing that is by helping expectant parents (and thus, insurance companies) weed out birth defects that could be potentially costly.

I wish I could read these articles with some emotional detachment, I really do.  Frankly, it’s no fun at all to read these things and feel the sharp slap of a reality check: people see my son as a birth defect – a preventable birth defect.  People don’t want to have a kid like mine.

A 29-year old woman is mentioned in the article and said to have been “ecstatic” when she underwent the new blood test and got the “great news” that her fetus was “healthy.”  Apparently, she tested specifically with Edwards syndrome (trisomy 18) in mind – I admit that it’s easy to understand the relief someone would experience at learning that their child-to-be did not, in fact, have a condition that is generally not compatible with life.  Why is Down syndrome (trisomy 21) grouped together with Edwards syndrome and Patau syndrome (trisomy 13) for purposes of these prenatal tests anyway?  Merely because they’re all trisomies and are detectable?  Because the fact is that Edwards syndrome and Patau syndrome are really in a different category, as they are generally not compatible with life, whereas Down syndrome is very compatible with life.

From the article:

Doctors say that advances like cfDNA simply provide more accurate information. “The first step is being able to reliably identify those pregnancies that are at risk for abnormalities,” says Dr. Michael Greene, Chief of Obstetrics at Massachusetts General Hospital. “What if anything the patient wants to do with the information is up to them.”IMG_3680

But see, that just isn’t true.  These tests do not “simply provide more accurate information.”  How that information is presented to expectant parents, how they are counseled by their medical care providers, right down to the language used – it all has a huge, huge impact on what patients will do with the information.  So, to imply that these tests and the medical community that advocates their use and administers them are merely providing a service to expectant parents – it’s just not true.  The whole situation is so loaded with biases and misinformation and dollar signs – the deck is so stacked against fetuses with Down syndrome, it’s just tragic.

Sometimes I feel so beaten down by how hard I have to fight just to get the world to see Finn as a person.  I know all the prenatal tests were not developed with Finn specifically in mind, and yet, how can I not take it personally?  Finn has Down syndrome.  These tests were developed and are utilized as a means to prevent kids like Finn – kids who are seen as defects.

As I was fuming after I read that article earlier today, it hit me that none of my other kids has to prove they are valuable human beings; I’ve never had to fight for any of my other kids to be given the same opportunities as their peers; I’ve never had to ask anyone to stop using derogatory language that targets my other kids; I don’t have to worry about anyone looking at any of my other kids and thinking to themselves, “Boy, am I glad I don’t have a kid like that”; and I don’t have to sit and stew over tests being developed to prevent future occurrences of kids like any of my kids except Finn.

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