Last fall, five days after publicly announcing — at my wedding — that I was 11 weeks pregnant, I got terrifying news. My first-trimester screening showed signs of a terrible problem. The nuchal translucency -- the clear space in the tissue at the back of the baby's neck -- was enlarged. They weren’t sure if they saw a nasal bone. The doctor suspected a serious chromosomal disorder like Down syndrome or another trisomy.
If it wasn’t chromosomal, the doctor explained, it was likely a cardiac problem. And if it wasn’t cardiac, it was likely genetic.
“What are the chances that the baby is just fine?” my husband asked, begging for a ray of hope, however thin.
Our doctor, Melissa Fries, shook her head grimly. “Five percent,” she answered. “Maybe ten.”
Those anguishing weeks, as we waited for more definitive answers, were terrifying and humbling. And they taught me a lot about what constitutes good prenatal care.
I’ll never forget the hug Dr. Fries gave me before I left her office that day, after I submitted to a needle in the belly so she could take a tiny chunk of the placenta for analysis — a chorionic villus sampling (CVS). As my heart flooded with sadness, her hug was like a mother’s hug, and I cried on her shoulder like a little lost child.
The following Friday I waited by the phone for the CVS results, but when Dr. Fries called it was with the disappointing news that the results weren’t in yet and we would have to wait until Tuesday. After the 10 days we’d already waited, another four seemed unbearable.
“All right, thanks,” I said, preparing to hang up and cry some more. But she stopped me. She wanted to know how I was doing. She wanted to know if I just wanted to talk.
I’ve had some good doctors in my life, but I never would have expected someone as busy as Dr. Fries to call me up just to talk about my feelings or give me space to ask the questions I hadn’t thought to ask.
News from the CVS dribbled in. They tested first for the four most likely explanations for the enlarged nuchal translucency: Down syndrome, Trisomy 13, Trisomy 18, and Turner’s syndrome. All four came back negative.
“So that’s good news, right?” I asked Dr. Fries.
“This doesn’t change what we saw,” she told me, refusing to engage in optimism. “If it’s not this, it’s something else. We’ll keep looking till we figure out what it is.”
But by the next week, when the full CVS results came back negative, virtually eliminating the possibility of a chromosomal disorder, she allowed for a little more rejoicing. The negative results were “puzzling," she said, "but gratifying."
I cuddled those words to bed that night. Dr. Fries was surprised, and I prayed we’d keep on surprising her. And we did.
We started doing frequent ultrasounds, and they all looked normal. At 17 weeks, Dr. Fries invited me into her office to check what the scientific literature said about a case like mine. Together we bent over textbooks and logged onto her medical databases. We discovered that the baby’s normal chromosomal profile and healthy ultrasounds put us in the general population for risk, even despite the enlarged nuchal measurement. The general population never sounded so good.
After that, Dr. Fries’ attitude changed. The ultrasounds became a formality, a little check-in with a baby we all now expected to be born healthy.
That morning studying the research in Dr. Fries’ office felt like an invitation to participate as an equal in my own care — a sensation far too few people get to experience. She blurred the hierarchical distinctions between doctor and patient, empowering me with knowledge and the agency to strategize my next steps.
We still had to wrestle with the possibility of a cardiac problem. Luckily, a doctor at a collaborating hospital was a nationally renowned expert on fetal echocardiograms and was willing to perform them starting at 12 weeks, though most doctors won’t look at a fetus’ heart until 20 weeks. She cautioned that a 12-week scan can’t give a full picture but sympathized with anxious parents desperate for any information they can get. She trusted us to understand partial news for what it is.
Ultimately, the decision whether or not to proceed with the pregnancy rested with me. Every doctor, midwife, and counselor I saw took pains to remind me I could just get off this train and try again if the uncertainty was too much for me to bear. These affirmations of my freedom of choice sounded to me like veiled warnings that I shouldn’t be so easily cheered by the good news I was getting. It felt as if they didn’t really believe in it.
I could have read doom into their words but I chose to accept them for what they were: an acknowledgement of my own power to make this decision for myself, based on my own assessment of the odds and my own tolerance for risk.
Dr. Fries also arranged for me to see another genetic counselor at Children’s National Medical Center, just to put another pair of eyes on our situation and give us another person to turn to for guidance and information. Rather than assume her opinion was all we needed, she made sure we were making decisions based on multiple perspectives.
My support team extended far beyond the doors of the hospital. Friends came over to make us pancakes, to entertain our daughter, to hold our hands. Family members sent chocolates with notes saying, “Chocolate doesn’t help anything, but in our experience it doesn’t hurt either.” They responded to my cautiously optimistic email updates with rows and rows of exclamation points.
Not everyone got it right every time. During those long weeks of limbo, it was too soon for unsolicited counseling about abortion, but some came anyway. I wasn’t ready to entertain questions about whether I was excited the baby was a boy, since I wasn’t sure yet I was ever going to meet him. One friend made me feel bad about getting prenatal tests in the first place.
What mattered was that I didn’t carry this burden alone. And when I gave birth this spring to a baby boy who was chromosomally and genetically unremarkable (except for his extraordinary adorability), I had legions celebrating an outcome we had all prayed for — even when it seemed remote.
This story about good prenatal care is, at its root, a story about a misleading test result.
Are these tests worth doing? Should I blame the doctor for putting me through all that heartache and worry for nothing?
Statistics are statistics. In most cases, an ultrasound like mine indicates a major problem, and I was grateful to have access to that information. Modern medicine hasn’t evolved past the point of having to decipher imperfect smoke signals to determine the health of babies in the womb. As the fetus grew and came into focus, we were reassured. I was able to wait for round after round of test results and was rewarded, against all odds, with a baby whose most intensive medical interventions are likely behind him.
Making clear-headed decisions in the face of fear required information, patience, and support. I was lucky that my prenatal doctors and midwives were so generous with all three.
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