Opinion

A PIECE OF MY When Practice Questions Become Real Life

MIND

Golda Rose Grinberg, “That looks so sad. At least they can fix it,” I thought.
BS I was a first-year medical student in anatomy class glanc-
T.H. Chan School of ing at a slide about cleft lips and palates. Two years later,
Medicine, University
while navigating an emotional reproductive journey,
of Massachusetts,
Worcester. my husband and I looked at an ultrasound revealing
a cleft in our baby. My mind jumped back to those slides,
and I couldn’t help but think, “This actually happens
to people?”
A week after I delivered, I was pumping in the
middle of the night in a hotel room across the street
from the neonatal intensive care unit (NICU) where my
6-day-old son was still admitted. Beyond exhausted,
I called for the first time at that hour just to check in. “How
did you know?!” was the nurse's response. “He just had
a bloody diaper and we're talking to the doctor. We'll call
you back with the x-ray results.” Twenty minutes later,
but what felt like forever, the doctor called to confirm
a diagnosis of necrotizing enterocolitis. He said it was ev-
ery neonatologist's “worst nightmare.” I started gasp-
ing for air. I used to be happy when I identified the diag-
nosis of necrotizing enterocolitis on an examination
question. It was an easy answer. The baby always died.
The difficult news continued to arrive as my baby’s
problem list grew longer. After 2 months, we finally iden-
tified the cause of apneic spells that made him turn gray
until we bagged oxygen back into his lungs: it was sei-
zures that could be suppressed with phenobarbital. As
any third-year medical student would do, I pulled up the
UpToDate article on neonatal epilepsy. My stomach
dropped as I had a flashback to reading this same page
6 months ago during my pediatrics clerkship.
There is a high incidence of early death (15 to 20 per-
cent) associated with neonatal seizures….The following
long-term outcomes have been reported: Global de-
velopmental delay (55 percent), intellectual disability
Corresponding
Author: Golda Rose (20 to 40 percent), cerebral palsy (25 to 43 percent)…1
Grinberg, BS,
T.H. Chan School of The list of poor outcomes went on and on. I remem-
Medicine, University
of Massachusetts, ber that young patient who presented with shock-like
55 N Lake Ave, jerks. At the time, I was perversely grateful that I wasn't
Worcester, MA 01605 the child’s mother. But now I was that mother.
(golda.grinberg@
Not only do I have to navigate the many diagnoses
umassmed.edu).
associated with having a medically complicated child as
Section Editor: Preeti
Malani, MD, MSJ, I return to complete my clinical rotations, but I’m con-
Associate Editor. stantly surrounded by reminders of how atypical my
experience has been. Every part of my obstetrics and
gynecology rotation was challenging. Assisting with
normal vaginal deliveries that I had so desperately
wanted for myself. Observing Cesarean deliveries that
did not end with the infant being intubated and whisked
away to the NICU. Participating in prenatal appoint-
ments where patients expressed anxieties about their
otherwise picture-perfect pregnancies. But the mo-
ment that finally got me to break down, sobbing in the
call room was a simple shelf-examination practice ques-
tion. The question described a newborn with a cleft lip
and palate, microcephaly, shortened fingers, and a mur-
mur and asked the reader to identify the cause. The an-
swer: maternal consumption of phenytoin. The expla-
nation depicted a cartoon of an affected infant. I wanted
to scream at the question writer: “Do you know what it's
like to have a baby with a cleft and microcephaly! This
was not caused by anything I took. And now he is on
antiepileptics that are saving his life!” How ironic.
Before my son was born, life as a medical student
biased me toward focusing on the worst possible out-
come, even when such an outcome was statistically
unlikely. I can understand why. When you are clinically
responsible for a patient, it's important to be prepared
for all possibilities and plan for worst-case scenarios.
My now 6-month-old son has taught me, however,
that when interacting with patients and families, it’s
just as necessary not to forget the most likely scenario.
In fact, an estimated 89% of full-term neonates with
necrotizing enterocolitis survive2; about 45% of neona-
tal seizures are successfully managed with first-line
medications3; around 70% of clefts do not have an
identifiable cause.4
When clinicians present the facts but emphasize the
positive, this optimism is more than just a fuzzy feeling;
it has practical benefits. It can translate into genuine em-
pathy via a few extra minutes of presence at the bed-
side, a compliment on a baby’s appearance, or an anec-
dote about how a similar child prevailed. As a parent, it
has become easy to tell when a physician thinks deep
down that a child will not recover. I also notice when
someone focuses on my son’s big, curious eyes rather
than trying to match his overall clinical picture to an in-
fographic or statistic every time she examines him. More
often than not, parents are just searching for that glim-
mer of hope and human connection.

Conflict of Interest Disclosures: None reported.
Additional Information: I thank my husband for
allowing me to share our son’s story.
1. Shellhaas R. Etiology and prognosis of neonatal
seizures. UpToDate. Updated December 11, 2020.
Accessed July 5, 2022. https://www.uptodate.com/
contents/etiology-and-prognosis-of-neonatal-
seizures
2. Velazco CS, Fullerton BS, Hong CR, et al.
Morbidity and mortality among “big” babies who
develop necrotizing enterocolitis: a prospective
multicenter cohort analysis. J Pediatr Surg. 2017;53
(1):108-112.
3. Painter MJ, Scher MS, Stein AD, et al.
Phenobarbital compared with phenytoin for the
treatment of neonatal seizures. N Engl J Med. 1999;
341(7):485-489. doi:10.1056/
NEJM199908123410704
4. Shi M, Wehby GL, Murray JC. Review on genetic
variants and maternal smoking in the etiology of
oral clefts and other birth defects. Birth Defects Res
C Embryo Today. 2008;84(1):16-29. doi:10.1002/
bdrc.20117

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