I walked into the bustling newborn nursery resident team room at our tertiary pediatric care center with pep in my step: I was “pre-tending” for the week, serving as a junior attending during my pediatric hospitalist elective at the beginning of my fourth year of internal medicine and pediatrics residency. No longer was I relegated to a dusty whirring laptop as a cog in the wheel of the infant factory. No longer was I checking boxes and churning out discharge summaries. Now I had cards to flip, teaching to do, rounds to make, and hips to click.
I sat down, sipped my stale but free “nourishment room” coffee and glanced at my team’s board, which was bursting at the seams. “Yes, fraternal twins!” I shouted. Everyone looked up, groaned, then returned to typing. I was excited to meet the family, share stories about growing up as a twin myself, and to take care of their undoubtedly beautiful kids during what I could only assume would be a quick and uneventful admission for routine newborn care.
My first clue that I was mistaken was the phrase “palliative care following” etched lightly in red next to their names. N had been welcomed first with Apgar scores of 8 and 9. L followed not far behind his sister, vigorously, with Apgar scores of 8 and 8; he was, however, much, much smaller at 3 lbs 10 oz. L was born with hypoplastic left heart syndrome with an intact atrial septum, not a candidate for palliative surgeries because of intrauterine growth restriction. He was completely duct dependent.
Before rounds, the palliative care team made a timely and graceful entrance into the room, as they often do. They explained the prenatal backstory, the family dynamics in the room, and what to expect going forward. I felt empowered and grateful for their support. We had saved this family for last. We knocked and entered gingerly. The dichotomy of love and sorrow in the room was immediately palpable. It was chock-full of family and my eye quickly met the gaze of the new mother and father. I tried to use every muscle in my face to make the appropriate expression, but it was impossible. I softly congratulated them with my words while consoling them with my tone.
It was apparent to me how important both N’s and L’s physical examination and anticipatory guidance would be, but for different reasons. The mother and father were anxious for reassurance that N was healthy and apprehensive about L’s trajectory and comfort. N was beautiful and pink with 10 fingers and 10 toes. We talked about breastfeeding, the steps to discharge, emphasized how unremarkable their daughter’s cardiac auscultation was, and what her vital signs had been. Next, we took L to the warmer and delicately unbundled him. He was ashen, mildly tachypneic with a single, loud second heart sound, and systolic murmur. His parents proudly reported he had taken some colostrum by spoon and had thoroughly enjoyed it. My heart brimmed and I shared in their joy. However, they were cognizant of his air hunger and we worked together to form a plan involving intranasal fentanyl and midazolam with oral morphine. Over the next 24 hours, L met his extended family, and when not being swaddled, shushed, and swung, spent time with his twin sister in the bassinette, bundled, buttoned, and beaming.
I had a sudden flashback to some memories of my own twin, Amanda. The oldest are vague and easily slip from my mind’s eye without concentration: just heartbeats, bright light, touch, and warmth. However, at age 2, I vividly remember her liberating me from the confines of my crib in the late twilight so we could romp about as crepuscular explorers unbeknownst to our exhausted parents. Next, my mind wandered to the countless times on the playground when she defended me from would-be bullies with her sharp tongue and precocious pugilism. My heart sank knowing N would never know this unconditional fraternal love.
Things were going well, maybe better than anyone expected. L was taking some formula and continued to be interactive. This wasn’t the trajectory for which the mother and father had been counseled. As such, anxiety began building and on the second day of L’s short but bright life, during our family-centered rounds, we ordered a transthoracic echocardiogram (TTE) through shared decision-making for further prognostication.
I was paged urgently to the bedside that afternoon with the news that L had died. I walked lugubriously, collecting my thoughts and composure along the way. I’d encountered death often during my internal medicine training, but none of those cases had been this heartwrenching. I arrived outside the room just as a labor and delivery nurse exited and barred the door. She explained that L had become asystolic during the TTE. The echocardiography technician was visibly shaken. L was quickly placed skin-to-skin with his dad and remained inanimate for some time as the family started to grieve. He then spontaneously regained a pulse while lying unswaddled on his dad’s bare chest. It was nothing short of a small miracle and something that will stick with me for the rest of my life. I like to think it was pure love that brought him back to his parents, if only for a short time.
Over the course of the rest of the day L struggled. He became more tachypneic and less alert. The few frames of the TTE were read and things were grim. I returned to bedside multiple times into the late afternoon to give anticipatory guidance on when and which palliative medications to give to keep their beautiful boy comfortable, to ameliorate his suffering.
I was paged urgently to bedside early that evening to declare that L had died. I entered the room where death had stood just moments earlier. I auscultated. I palpated. Nothing. Each parent swaddled a twin, skin-to-skin, N with a heartbeat, L without. We shed tears together in a hospital room that now seemed more like an intersection between art and medicine, science and faith.
FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
- Copyright © 2018 by the American Academy of Pediatrics