After reading Maria’s story about giving birth in France, I began reflecting about the time when my OB/GYN told me that he was prescribing me tests to see if my unborn baby has Downs Syndrome.
Testing the fetus for Downs Syndrome is a standard procedure in France, so it was not because he personally thought my daughter was at risk. The only problem was, I did not want to know. Unlike Maria, I did not know that I had the option for refusing this test. My doctor made it sound like it was obligatoire.
I knew that these tests were not always accurate, so my baby could receive a false diagnosis. I also knew that I would love and want her no matter what, and knowing she had Down Syndrome would not have changed a thing for me. At the time, my husband agreed with me. Now, he says that babies are a lot of work and having a child with Downs Syndrome would be even more work. My daughter was next to me, making goofy faces and saying “da-dadada-dada-da-dada” to him while having this conversation. So I asked him, “if you knew she had Down Syndrome, you would not love her?” He smiled and scooped Juliana in his arms and gave her a hundred kisses. He told me that he would love her, but he would at least like to know in advance to prepare mentally.
When the doctor gave us the prescription for the tests, the one thing that comforted me was thinking that this test was to mentally prepare for the baby if she has Downs Syndrome, not for termination of pregnancy. I already loved her so much and I could not imagine debating on whether or not to keep her. In my mind, she was an angel. Anyways, who does not love a good challenge? It would be no fun if everything was easy, as it is our challenges that help define us, that make us who we are.
As it turned out, I was not challenged with a baby with Downs Syndrome, instead, I have a baby with tremendous curiosity and tendency to cause havoc at any given moment (last night she grabbed a bottle of balsamic vinegar off a low shelf while I was cooking, shattering glass all over the floor – I stepped on a piece and bled all over when I took her to safety. Maybe she is more devil than angel?!).
How is the fetus tested for Downs Syndrome?
The first step is to have your blood withdrawn and screened. You will receive a prescription from your doctor for this specific blood test. If your doctor or midwife does not administer the ultrasound himself/herself, then you will receive forms to give to the radiologist at your 12th week ultrasound appointment. This is considered to be the most important ultrasound because you will be given your official due date, measurements will be made, and you will know if it is likely that your baby will have Downs Syndrome.
At this appointment, the person conducting your ultrasound will study the nuchal translucency and nasal bone. The nuchal translucency is the space between the skin and soft tissues at the back of the fetus’ neck. The effectiveness of only this determining if the child will have Downs syndrome is 70 percent, with a false-positive rate of 5 percent. So, doctors couple it with observing the nasal bone. The nasal bone is underdeveloped in about 62 percent of fetus’ with Downs syndrome, and only 1 percent of those who do not have Downs Syndrome. Combining these two tests with the blood screening reduces the chance of having a false-positive but does not eliminate it.
Challenging its effectiveness of Downs Syndrome testing
A study in France from 1998 and 2001 at 12 maternity units found that out of 5,694 women, 26 had babies with Downs Syndrome. Using the method described above, they detected Downs Syndrome 73 percent of the time, with 4.7 percent of women receiving false positives. I am hoping that with improved technology and training, the number of false positives have declined since then. I can’t find any newer studies, but will keep my eyes open in the future to keep this post better up-to-date.
My personal thoughts
I believe this test is great for women who need to be mentally prepared for the challenges of having a child with this disease. However, what worries me is that I am sure there are women who terminate their pregnancies after receiving a false positive. Avoiding the controversial topic of pro-choice or pro-life, it is sad to know that babies are not getting their opportunity to live because a test showed they have something they do not. I can understand why some women choose to do this, as having a child who is not considered “normal,” is difficult and she may not have the time and resources to devote to the special needs.
My grandmother fostered children with Downs Syndrome who were abandoned by their parents, and my mom continued taking care of those kids for a while after my grandmother died of cancer (my mom had too many kids of her own to do this long-term). Since my grandmother and mother loved and took care of those children who were not even their own, I did not have a doubt in my mind that I could do it if my daughter turned out positive. We are living in a different time now, and there are varying degrees of Downs Syndrome, so some children do end up becoming independent adults.
I would be very interested in getting new numbers about false positives and the percentage of women who terminate their pregnancies after receiving a positive. If you know where I can find those, please let me know.