While sitting in the study lounge of my med school, I had on my computer screen one of our three slides on anencephaly. I was trying to memorize the two key phrases framing the graphic photograph of a stillborn baby with bulging eyes and a cratered head — “anterior neural tube defect,” and “elevated alpha-fetoprotein.” A third year walked past me and sneaked a glance at my screen. Without faltering his stride, he casually called out, “Know that stuff damn well, those neural tube defects are all over the boards.”
I chuckled and responded with a just-as-casual “OK, thanks. Got it!”
As I return to the screen, I remembered when I first learned the word “anencephaly.” It was after a close friend of mine, Hope, was taught the same word at the 20-week-ultrasound for her first child. Over the next few months, I witnessed Hope’s entire definition of motherhood be challenged. As she sat with her daughter’s diagnosis and her decision to not terminate the pregnancy, I watched her crumble with grief, wrestle with her faith, and ultimately find the strength to let go of her stillborn daughter.
My textbooks and my lecture slides can’t even begin to express the real story and meaning behind a typical, Latin-derived, doctor-word like “anencephaly” — which translates into “lack of a brain.” The more I stare at the slide, the emptier it looks. It is a terminal, congenital diagnosis. This meant the brain defect happened during fetal development, and the baby, if it made it to full term, would only live for a few hours after delivery.
For mothers like Hope, this definition isn’t a one-time tragedy. It’s a collection of awful, everyday moments and encounters — scenarios one is completely unprepared for. It’s facing neighbors, coworkers, check-out cashiers, and strangers who congratulate her with beaming smiles and wide eyes, asking about the due date and throwing out nonchalant questions like, “Are you excited?” and “How is the baby doing?”
Am I supposed to be excited about a daughter who I’ll never take home? Do I tell this stranger my due date is also the day my baby will die?
For mothers like Hope, this means raking through the days of their pregnancy — stripping and beating memories to find a point of fault, a person to blame.
Was it the green tea I drank all through the pregnancy? Green tea supposedly blocks folic acid and folic acid deficits are associated with neural tube defects. Or was it the half-marathon I ran three weeks into the pregnancy. I think the brain starts developing at three weeks, why didn’t I run slower? Or was it the hot showers? I love hot showers, and I never reduced the temperature once I got pregnant.
And for mothers like Hope, it means arriving at the labor and delivery floor and walking by newborn babies and overjoyed husbands. It means being induced for labor, cramping and crying, to give birth to a daughter who will never cry back.
We thought we’d have at least a few, precious hours with her after she was born. Babies with anencephaly, if they make it past the 4-month mark, usually continue to full term. That’s what was supposed to happen. But she died inside me, so unexpectedly, at six months. We felt robbed. We felt robbed and cheated of those last three months and those sacred hours after birth.
These are the parts of the definition that get lost in the curriculum, the parts that aren’t tested on my boards. Right now, as a medical student, I’m building my dictionary — so one day as a physician I can demystify and explain fancy, medical words to my patients. Yet, despite the thousands of pages and references I have, I’m quickly realizing where the true depth comes from. The definitions I memorize, anterior neural tube defect and elevated alpha-fetoprotein, are merely palm-fills of water compared to the oceans they came from.
There’s something deeply dissatisfying about this finiteness. Hence, I’ve spent the summer interviewing and listening to mothers like Hope, all incredibly strong woman who have had daughters with severe congenital illnesses. From them I’m discovering the parts that are unsaid; all that will be left out in my truncated, twenty-minute appointments. I’m learning a fetal complication is an extension of a mother. The baby’s disease is often manifested as tormenting anxiety and guilt that lingers for years. It affects future pregnancies and relationships, as mothers wonder if their womb is cursed, if their bodies are incapable, if their other children will be affected. Mothers grapple with helplessness, the total loss of control. They’re asked to sit and watch with hands tied, unable to engage, as their child’s body warps out of order.
With pregnancy being so public and by-default-exciting, moms learn how to navigate questions and change the subject. They learn to be gracious to nurses and doctors who assume the number of children they have based on their number of pregnancies. And they learn how to accept sympathy, but politely and genuinely.
For a doctor, an appointment and a diagnosis is like one page of book, simply one out of twenty in a day. But for a patient, that same diagnosis can be their entire story. The dichotomy is astonishing, but it is inevitable. As I try to balance myself on this uneven scale, I’m grateful for the pockets of insight these moms have given me. Pages of raw emotion and understanding that have acted like rays of sunlight peaking through shudders. As I continue to build my dictionary of doctor-words, I’m slowly beginning to see everything that’s left in the shadows. The boards may not test me on these parts, but for how I understand and serve my future patients — these are the lessons that are invaluable.
Cia Mathew is a medical student.
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