Make an excited announcement that you’re pregnant, and you know what people will say next. “Congratulations!” or “When’s the baby due?” are the usual responses. After that, though, and in hushed tones, you might hear something else: “Are you going to have The Testing”?
They are referring to prenatal, genetic, testing, which detects whether a fetus has chromosomal abnormalities ranging from Trisomy 21 (Down syndrome), Trisomy 18 (Edwards syndrome) or Trisomy 13 (Patau syndrome), to a number of other conditions including Cystic Fibrosis and Tay Sachs Disease. The prognosis and treatment for each of these diagnoses is very different, but at the center of it is a very complicated question.
When we ask about The Testing, we’re actually asking: “Are you a person who would have an abortion?” ... and too many people expect that the answer will be “No.” And it’s just not fair.
There are various ways for pregnant women to learn if the fetus they are carrying is affected by one of many chromosomal abnormalities. One kind of test, amniocentesis, can be performed early in the second trimester, usually around the 15th week of pregnancy, while another, chorionic villus sampling (CVS), can be performed as early as 10 weeks of gestation, providing valuable information within the first trimester.
These diagnostic tests are typically not conducted without the results of an early screening, which is done between 11 and 13 weeks of pregnancy, consisting of an ultrasound and a blood test – the results, combined with other factors such as age, are an indicator of risk. The screenings themselves are non invasive, and give expectant parents information that can help them decide if they will pursue diagnostic testing.
The tests come with higher stakes. Depending on whether you have insurance, and what that insurance covers, testing can be financially prohibitive. And, yes, while ultrasound is used to carefully guide the needle into the uterus, there is a risk of miscarriage. In facilities where amniocentesis is performed regularly, the rates are closer to one in 400. Chorionic villus sampling carries an increased (one in 100) risk of miscarriage, and a small risk of infection. There is an even newer, noninvasive test that promises to detect the same abnormalities in a blood sample, if you can afford that. The tests all come with a chance that you might receive difficult information, such as learning that your child could have a devastating diagnosis.
I didn’t have prenatal testing in my first pregnancy; I was 32 and felt great. I meditated and planned for natural childbirth, and didn’t do anything that could harm my baby in any way. During my second pregnancy, however, I had a feeling that something was wrong, and a genetic counselor told my husband and I that based on my age and the abnormalities observed by an ultrasound, there was a one in three chance that our baby would have a chromosomal abnormality. She recommended we do the test that day.
After consideration of the risks, and knowing that the doctor performed several CVS tests per day, I agreed to have the testing. My husband held my hand, but the procedure was quick, and it took two days to get the results. During the anxious wait, I prayed for my baby to have Down syndrome, but the results of the testing were much worse.
The baby had Trisomy 18, a condition which, like Down syndrome, is caused by an error in cell division. According to the Trisomy 18 Foundation, this occurs in about one out of every 6000 live births in the United States. Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are potentially life-threatening. 50% of babies who are carried to term will be stillborn. Few of the babies that make it will have a first birthday.
I chose to have an abortion.
When you’re pregnant – at least from what I’ve experienced in America – you’re under a microscope. Don’t touch that glass of wine. Don’t sleep on your stomach. Sleep on the left slide. Don’t even look at that slice of turkey from the deli. Don’t place your baby at risk. The judgment only intensifies when you have a prenatal test. Even just the screening.
As a mother and as a trained birth doula, I recognize and understand concerns about the risks associated with diagnostic procedures. Still, I fear that genetic testing is becoming a polarizing issue like abortion, because of abortion – when it’s really just another moment to make sure women have access to compassionate care and comprehensive information. We could, in such moments, support each other as human beings, rather than trying to pick sides and heighten our differences.
There are many groups, with varying agendas, including people within the healthcare industry and insurance companies, who want to decrease the number of women accessing prenatal testing, and I fear a proliferation of anti-choice messaging having an impact on what must remain a personal healthcare choice. Pro-life discussions around genetic testing are centered primarily around Down syndrome, which makes sense. Babies born with Down syndrome typically live long, fulfilled lives, working and living independently. We should spread this awareness, far and wide. But being quiet about the other conditions that can be found via diagnostic testing is being dishonest with women.
Being pregnant is difficult and mysterious enough as it is; there’s no good reason that we shouldn’t give women access to more information about what’s going on inside their bodies, and there’s absolutely no reason to judge them for pursuing this information.
