A recent news piece about a couple who almost made a tragic decision – terminating a baby who turned out to be perfectly healthy – both angered me because of it’s inflammatory reporting and earned some sympathy for the couple. I, too, had some worrisome testing results in two of my pregnancies that caused me weeks of anguish. Here’s what I learned.
OK, so first of all, these blood tests only assess your risk. It bugs me when people say they had a “positive” test result. There is no such thing. Your result is either 1 in 1 million, 1 in 1000, 1 in 8, etc. Yes, there is a point at which you get red-flagged, but it’s still not “positive.” Likewise, there’s no such thing as a “false positive.” If your risk is 1 in 5 and you turn out to be one of the other four, it wasn’t false. It just means you were lucky. Only diagnostic testing can tell you for sure one way or the other.
When I was pregnant with my first baby to make it out of the first trimester, every test and ultrasound filled me with dread. I went to my MFM (maternal-fetal medicine, a.k.a. high risk doctor) for my NT scan with a ball of knots in my stomach, but my ultrasound turned out to be perfectly fine. My blood test results, however, were not. My baby had a significant risk of Down Syndrome.
“Mean Doctor,” as I like to refer to one doctor in the practice, did not make it any easier for me as she harshly explained the results. My pregnancy was already difficult enough, with bouts of heavy bleeding that had put me on bed rest. I was trying to run my magazine from my couch, and was stressed to the max. Now I had this to worry about. If I had further testing to be certain, it would be invasive – a CVS or an amnio. And with my pregnancy already so unstable, I didn’t want to risk miscarrying.
After the appointment I thought about what I would do if the baby had Down Syndrome. As much as I had gone through to have a baby, I couldn’t fathom the challenge that would be in front of us; and it was in fact our past struggles that were leading me to consider terminating. I didn’t think I could handle any more struggle in my life.
Unlike the couple in the news piece, though, I was not going to make any decisions until I had confirmation. I showed up for the amnio at 16 weeks completely stressed out and on the brink of tears. Mean Doctor (ugh, how had I ended up with her again?) came in before the procedure to make sure I understood that especially for this pregnancy, the procedure could induce a miscarriage. Wait a minute, I thought. Wasn’t this the woman who told me to have the amnio in the first place? Then the water works started. I told her my husband and I needed time to talk. She and the technician left the room. I couldn’t stop sobbing. It was just all too much to take.
“Please,” I said to Foggy Daddy. “Tell me what to do. I can’t make this decision.”
Normally one to let me make the decisions about the pregnancy, because, after all, it was my body, FD sighed. “I don’t think we should do it,” he said. I felt like a burden had been lifted off my shoulders.
The doctor came back in and we told her our decision. Later in the medical notes I read that she wrote we had decided not to have the amnio “after considerable deliberation.” FU, lady. FU.
We went home with no further answers than we had before. It turned out not to matter because a little over a week later I lost the pregnancy. Genetic testing was done and the baby, our daughter Samantha, did not have Down Syndrome. Part of me wondered if losing her was payback for considering terminating. But since then I’ve learned not to see the universe that way.
A year and a half later, when I got pregnant with LM and had the same results with the NT blood work, I wasn’t phased. There were no markers on our ultrasound for Down Syndrome, so I had a feeling that these “off” results were just something my body does. I would not risk miscarrying from a CVS or amnio, however small the chance, but now there was another option: more bloodwork that can more accurately test for genetic abnormalities. Brand names include MaterniT21 and Harmony, the latter of which my doctor ordered. Apparently there are some fetal cells in the mother’s blood that the lab can look at – but the first sample they took from me did not have enough cells to test. The second sample was the same. I was starting to lose hope, and resigned myself to the unknown. But the third and final sample finally yielded results. The genetic counselor left a message with the good news that the baby had a very low chance of Down Syndrome, and I replayed it over and over. “You’re hearing the same thing I’m hearing, right?” I asked FD. “Yes,” he reassured me. “We’re good.” After my past experience, I wouldn’t have considered terminating the pregnancy, but I was happy to have my mind put at ease.
Then at 16 weeks I had more bloodwork, something known as the “quad screen.” And more wonky results followed: I had high alpha-fetoprotein. Apparently this put the baby at risk for spina bifida and some other problems. When the doctor (not Mean Doctor, thank God) called me in, I saw the grave look on her face. I was, oddly, calm. I just didn’t believe there was anything wrong, that my body just doesn’t adhere to “norms.”And I was right – LM did not have spina bifida, or anything else.
This isn’t to say that I don’t believe in prenatal genetic testing. It’s a good way to cheaply, non-invasively assess risks, and can make you better prepared for the birth and care of a child with special needs. It is about much more than just termination. But the flip side of this testing is that it makes many more women worried than, in fact, need to be. I think it’s a necessary evil.
Did you do prenatal genetic testing? Why or why not?