“You’re lucky,” the nurse said during my first trimester prenatal exam. “With this new blood test, we’ll be able to check for chromosomal abnormalities without you having to take a CVS or an amnio.”
I was so relieved. I was pregnant for the first time and at 13 weeks, I was already starting to show. My husband and I met in our late 30s; now, in our early 40s, my advanced age was likely why we had trouble conceiving. We had put ourselves through the emotional turmoil, physical discomfort and financial expense of a failed IUI and two failed rounds of IVF before our doctor gently suggested we try egg donation or adoption. Devastated, we took a break from trying. Two months later, at age 42, I watched in disbelief as a plus sign developed on a home-pregnancy test.
Eight weeks on, we were still so blissfully happy that we hadn’t yet discussed having a CVS or amnio. We were too busy pouring over the four sonograms of our little baby. In just over two months, we’d watched him or her morph from a bean-shaped embryo into a little human being with a face and arms and legs — fingers and toes, too.
STORY: Why I Hated Being Pregnant
As my blood test date grew closer, my older mom friends filled me in on the dreaded chronic villus sampling and the equally awful-sounding amniocentesis. As harrowing as it was, though, they all agreed the tests were worth it in order to find out whether their baby had a birth defect or a genetic disorder like Down Syndrome.
I’d heard from moms on the other side of the fence too — the ones who’d refused to take either test. A few considered the potential for miscarriage too large (loss rates for CVS and amnio have been reported as 1.4% and 1.9%). Another said there was no need: She’d already decided to carry the child to term, no matter what. (Fortunately, her baby was born perfectly healthy.) I always listened respectfully, but I knew that I would be taking these tests. I needed to know whether my baby was healthy and normal.
So I was thrilled when the nurse said that I was among a new generation of high-risk pregnant women who could have the best of both worlds: all the important chromosomal information for the baby growing in my belly — plus the gender — without the pain and risk of the CVS or amnio. While those tests required DNA to be directly sampled from the placenta, the relatively new-to-market, non-invasive MaterniT21 PLUS, would simply isolate the fetal DNA in my blood. All I had to do was take a blood test.
Yet waiting for the results was impossibly hard. “What if there’s something wrong with the baby?” I asked my husband. But he reassured me that the odds were very much against that situation — around 100 to 1, in fact. So I put the thought out of my mind. After all, we were both healthy: vegan, fit; I meditated semi-regularly. And despite a long, challenging road to pregnancy, we were almost out of the “danger zone” (a.k.a., the first trimester).
It was a hot summer Monday when the social worker from the doctor’s office called. She got right to the point: The test indicated that there was an extra 21st chromosome. “I’m so sorry,” she said, “but there is a 99% chance that your child will be born with Down Syndrome.” She then advised that we have another test so we could be .9% more certain: the CVS.
After I hung up the phone, I felt alone with my burgeoning bump. I didn’t want to tell my husband while he was at work so I called a friend who advised me to keep the information to myself. “People can be very judge-y about this sort of thing,” she said. Judge-y about what? I wondered. This wasn’t a result of anything my husband or I did — regardless, I took my friend’s advice.
When I broke the news to my husband, he immediately began searching for “raising a Down Syndrome child” online. My heart broke. A few days earlier, he was the happiest I’d ever seen him, his hands cradling my tummy while we danced at a concert. How was I going to tell him that, should the CVS confirm our worst fears, I didn’t want to keep the baby? My child deserved better than a life of struggle and frustration due to a condition that he or she would never be able to change. Plus, there was no predicting the severity of the disorder — some children with Down Syndrome are able to feed themselves and attend school; others require more urgent and consistent care. Knowing that my husband and I wouldn’t live long enough to provide the necessary long-term care for our child was stressful, to say the least. I did not want him or her to ever feel lonely, lack independence, or be confined to a nursing home when we passed on.
“Do you remember the people who live in Nana’s nursing home — the ones who aren’t elderly?” I tried explaining to my husband. Mostly they just sat in their wheel chairs, staring into space. “No one comes to visit them,” Nana had said, adding that most had older parents who’d already passed on. My husband listened, then resumed his search.
Two days later, we went to a hospital for the CVS. Although the social worker had warned us not to get our hopes up, I couldn’t help it. After all, the MaterniT21 PLUS test was still so new — perhaps an inexperienced lab worker had mistook our baby’s normal DNA for abnormal.
I asked the doctor whether it was less painful to have the needle inserted via the abdomen or the vagina. “The vagina,” she said. Then she consulted the ultrasound to determine the position of the fetus. “You’ll be having it in the abdomen.”
Soon I was too busy staring at our baby on the screen to be preoccupied with pain. The fetal heartbeat was so loud and strong. It didn’t seem like anything was wrong. Then I thought: Might this be the last time I see him or her? “It doesn’t matter if the baby is born with Down Syndrome,” my husband said, reading my mind. “I’d still be proud.”
On our way home, we stopped at a sidewalk cafe. There I noticed an older couple with their son who appeared to have Down Syndrome. They were trying to prevent him from running out into the street so they could hand-feed him a slice of pizza and wipe his face with a napkin. Though he behaved like a rambunctious toddler, I wondered if he were a teenager or older (it’s often difficult to determine the age of someone with Down’s). I looked at my husband. He had noticed them too.
The next day, the social worker called back. As predicted, the CVS results were the same but even more clear: There was a 99.9% chance that the child would have Down Syndrome. The social worker then asked if I had any questions, and a big one popped into my head.
“Could you please tell me if the baby is a boy or a girl?”
She answered my question with a question: “Are you sure you want to know?”
“Yes, I do.”
When she told me, I burst into tears. Only then, after I’d gotten to know my baby as well as I possibly could, did I feel I was ready to make the hardest decision of my life — terminate the pregnancy. And I would make it as a mother who wanted to do the best for her child.
Editor's Note: This essay has been written under a pseudonym due to the sensitivity of the subject matter.