Thursday, June 6, 2013

NPR : "With advances in prenatal testing, difficult choices arise"

Today, I'm going to talk about this NPR story:

The main interview is with  2 women- one who chose to terminate  and one who chose to carry to term; both had a prenatal diagnosis of Down Syndrome. I think parts of the discussion were skewed, because their children would likely have survived decades if not terminated. Discussions on terminations for medical reasons tend to center on T21, but many women face fatal or nearly always fatal diagnoses, which is different.

The title of the piece was "With advances in prenatal testing, difficult choices arise" One of the points of which was in the age of advanced prenatal testing there are more and more chances to discover an abnormality, leading to choices needing to be made about the child being carried.

This is a strange angle to approach the effect of prenatal testing (PNT) in my mind. Generally, PNT detects: T21, T18, T13, NTD and major structural abnormalities (heart, brain, limbs, kidneys etc). If you're both carriers, they can also test for cystic fibrosis and other inheritable disorders. Many of these are cause for "difficult choices" regardless of when they are discovered. Yes, during the pregnancy it can be a termination decision, but after parents will often contemplate taking life sustaining measures- or not: surgeries, non-surgical interventions, and the signing of DNR documents.

Had we carried to term, we would have refused heroic measures for Blue Sunday- he would not have undergone surgery. Comfort care would have been taken, and that's it. That is still an incredibly difficult choice- and one that is, in my mind, harder than the one I made with Blue Sunday. A child who cannot yet feel pain is easier think about objectively about in comparison  to one who can. To watch that struggle would be mind-bendingly awful.

To me, PNT was a blessing. Had there not been PNT, I still would have had a child with T18. Nothing about looking for it made my child have a chromosomal abnormality. There was a women in my on-line birth club who had a child born with trisomy 18. It was a birth diagnosis and the baby died within a week. I cannot imagine the additional mental anguish of being unprepared for such a diagnosis, losing your child you expected to live, to go home to a waiting nursery.

That was the major point that struck me as I listened to this story. Here is the other:

WALDMAN: in our quest for perfection, I think we have to come to terms with the fact that there is a certain amount of unknowable information in this business of having children. And you have to be willing to embrace the unknowable if you are willing to be a parent.
MCLAUGHLIN: I think that - couldn't have said that better myself. I think that in life, not just in prenatal diagnosis, in life, you know, there is the unknown, and it's an imperfect life. And I would argue that we're all imperfect to some degree and, you know, what does this mean, and would you want to have a perfect life, and what is the quest for perfection? And who decides what makes a life worthwhile? I think that's sort of a bigger question as you look at the ethical issues at these tests expand because right now, it's restarting chromosomal anomalies. But what will it be 10 years from now, 20 years from now? I think that's an important question that people need to ask.

Just in case it matters: Waldman is the mother who chose to terminate, and McLaughlin chose to carry to term. 

Their viewpoint is not one that I share. Though I understand some may see an element of pursuing a 'better child' when you terminate for a defect but it is important to remember that the defect in question isn't height, predisposition to obesity, or even BRAC1 mutation- the defect is life altering and in many cases life threatening or life-ending in an immediate or eminent way. I am sure that there are people who would terminate for some of the traits I mentioned, but there are not many of them. Not even enough to really discuss, in my mind.

I didn't terminate Blue Sunday because he was imperfect- everyone is imperfect. I terminated because my child would suffer and die within minutes or days of birth. My life (and his) was made better because of prenatal testing.  Perfection is a myth- but most people fall in the 'perfectly imperfect' range- that is they are imperfect enough to be human (as opposed to a deity) but not so imperfect that they cannot live.
We aim for perfectly imperfect.

Did anyone else listen to this piece? Thoughts?

1 comment:

  1. I did not listen to this piece, but I just read the transcript. I don't think the women were saying that their babies weren't perfect and that's why they did or did not terminate. They were saying, partly, that the information that prenatal testing reveals is not perfect. The lack of perfection of which they spoke was that you will likely never have enough information to make the decision to terminate. But you have to make it anyway...hence, dealing with the lack of perfection.

    Again, I didn't hear the conversation, but I was struck by the lack of judgement and the acknowledgement that only the baby's family can make these decisions. So true.

    What I think about now is whether I will test in future pregnancies. It seems strange not to, because I terminated for my baby's sake, and yet I don't feel like I could make that kind of decision again.