I blogged about my reasons for taking the test this pregnancy HERE...I have no regrets about taking the test, and I feel strongly that there are many valid reasons for doing so.
Today's post is about the other reason.
When I went for my level II ultrasound last month, I wanted to know everything I could about our baby. Specifically, I wanted to make sure this baby did not have any known issues, including Down syndrome, that might change our plans about delivering in a small town hospital. As I wrote in the post I referred to above, I never want to be separated from my baby at birth again, if at all possible. Having Lily transported two hours away from me was a very difficult experience, one I never want to go through again.
We told the genetic counselor this at our appointment, fully expecting that we would have to rely solely upon the ultrasound to give us any indication of potential risks. I did not want an amnio, and I chose not to do the quad marker screening earlier in my pregnancy, given the odds that it would probably come back positive anyway, due to my advanced maternal age.
So I was surprised when the genetic counselor asked if I would like to have the blood test for Down syndrome done ~ because I was twenty weeks along.
In all my research on this test (I ran an extensive series on the new prenatal test for Ds last spring) I had somehow missed the fact that it is available at any stage of pregnancy. I assumed that the test was like the quad marker screening ~ that it had to be done in the first trimester ~ and I told the counselor so.
"Oh no, it's available at any point during pregnancy. It's just marketed as available during the first trimester so that..." she stumbled over her words, smiled and looked at Lily, and attempted to finish the sentence.
"So that parents are given that information as soon as possible. Because if you wait to test until 20 weeks, then in some states you are up against...that cut-off point..."
"For termination," I finished for her.
Don't get me wrong ~ our genetic counselor was an extremely kind and soft spoken woman, who was just doing her job. She commented frequently about how sweet Lily was (we brought her along) and mentioned the following information....
In October 2008, Congress enacted the Prenatally and Postnatally Diagnosed Conditions Awareness Act (referred as the “Kennedy-Brownback Act”) with broad bipartisan support .
The act requires the federal government to arrange for the collection and dissemination of up-to-date, evidence-based information about the conditions subject to prenatal and early postnatal diagnosis. This information encompasses “the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes.” Such information should provide a powerful corrective to the “bad news” typically delivered to pregnant women whose fetuses are diagnosed with the tested conditions. A body of research suggests that much of the information now supplied is heavily biased, outdated, highly inaccurate, and almost always narrowly clinical . The act may have an even greater impact on prenatal decision making, however, if it helps to reframe how women and their physicians view decisions about continuing or terminating a pregnancy in the face of positive test results.
I get that doctors and genetic counselors and those involved in the care of a pregnant mama are just doing their job.
I get that.
What I don't understand, is how someone making advertising decisions at companies like Sequenom and Verinata, can decide to market their product with the aim of providing women information early enough so that they can make a decision to terminate before they are...up against that cut-off time.
This isn't a test to determine if a baby is compatible with life. This test will not tell you if your baby has a heart defect or kidney problem or brain condition...this test will not give you an answer about how far your child will go in life, how smart they will be, how "functional" they will be.
This test lets you know if your baby has Down syndrome.
Because apparently those two words alone can justify ending a life.
Can I tell you something from this side of things?
I wasn't expecting Lily to be who she was. I knew there was a possibility that she would have Down syndrome, but really I had absolutely no idea what that meant, in terms of raising her. I had some preconceived notions based on old stereotypes, I had people in my life who I had known who had Down syndrome to reference off of, but I had no idea who my child would be.
And neither do you.
This test...or maybe future tests that may tell us other "conditions" our children might have...cannot tell you what your baby's life will be like.
I have friends who gave birth to very healthy, very "typical" babies, who later on developed conditions or were struck with disease, or faced tragic accidents, and nobody could have predicted who those children or adults would be today.
No test could have told me who Lily is. No doctor could have prepared me for what our lives look like today, and while I do firmly believe information for the sake of preparation can be a good thing, I do not, I cannot believe that it should be provided as a reason for termination.
"I have good news for you," said the kind and well-meaning genetic counselor on the other end of the phone two weeks ago. "No Down syndrome or other chromosomal issues." As I thanked her and hung up, I turned to kiss a little piece of Heaven beside me...
...who also happened to be good news.