prenatal screening tests

Mamas on Bedrest: Would You Abort a Baby with Genetic Defects?

March 16th, 2012

My friend Mollee over at Pregnancy.org posted this piece on her blog.

“Couple Awarded $2.9 Million Dollars for Incorrect Prenatal Diagnosis

In one of the most controversial cases of its kind, a jury in Oregon has just awarded parents Ariel and Deborah Levy $2.9 million in their wrongful birth lawsuit against their doctor…The couple was told that their prenatal tests did not detect Trisomy 21, more commonly known as Down syndrome. However, when their little girl was born, she did in fact, carry the extra chromosome.  The Levys said that they would have terminated the pregnancy had they known that their child would have Down syndrome. “

Wow! All I can say is Wow!

There were so many striking points in this article that I recommend that each mama read the article for herself and draw her own conclusions. Whether or not to terminate a pregnancy is such an intimate, important and often times gut wrenching decision I don’t think any of us could ever know that depths of the decision without being faced with it.

My husband and I faced a similar decision when we began having children. I gave birth to my daughter just weeks before my 37th birthday and I was 40 yrs and 4 months when I gave birth to my son. For this and other medical reasons both my pregnancies were high risk. In particular, I miscarried before each successful pregnancy. When I became pregnant with my daughter and the pregnancy actually progressed, my OB suggested that I have an amniocentesis. I flat out refused.

According to the American Pregnancy Association, Amniocentesis carries a risk of miscarriage of 1/400 women to 1/200 women depending on the facility performing the procedure (Those facilities that perform many amniocenteses have rates closer to 1/400.) As a woman who had already miscarried and now had a “viable” pregnancy, there was no way that I was going to risk the pregnancy by having an amniocentesis. My husband initially wanted the procedure so obviously we were at odds. We met with my OB to get answers in order to make an informed decision.

“An amniocentesis  is a diagnostic test,” she told us. “It will tell us definitively if there is a problem with the baby. However, it is not a therapeutic test, meaning that once we diagnose a problem, especially a genetic problem, we can’t treat it.” With that information, we both decided against an amniocentesis. Neither of us would abort our child, so why risk it? However, we did want to know if there were other, less invasive ways to detect genetic or other developmental abnormalities. Turns out there are several prenatal screening tests that can  give an indication that there may be a problem. Parents can then decide how they wish to proceed.

We had the First Trimester Risk Assessment with both of my pregnancies. High level ultrasounds provided a clear visual of each of my children showing their normal musculoskeletal deveopment (including normal head formation and no cleft palates). Blood tests showed very low risks for genetic abnormalities. This was a great choice for us and provided a high leve of comfort and relief. Other screening tests are available. Do discuss with your OB you options for prenatal screening tests.

I don’t know how I would have responded if one of my children, despite the screening tests, was born with Down’s syndome. I’ve seen so many kids with Down’s Syndrome do so well, yet I know of many others that have chronic health issues, developmental delays and learning disabilities. I don’t think that I would have sued the perinatal group that performed the test or my OB, but who knows? Children with Down’s Syndrome require a lot of additional care that is expensive. Again, I don’t think any of us can predict how we’d react unless we’re in that situation.

I encourage all pregnant mamas and their partners to read the blog post on Pregnancy.org, to read through the references and citations provided here and have a frank discussion with your OB if you have not already done so. As always, knowledge is power and the more you know, the more you can act from a position of strength and wisdom instead of react out of fear and outrage.