Just be the parent

“Just be the parent. You don't need to also be the doctor right now.” I heard this from friends and family after my son was born at 24 weeks' gestational age, weighing just over 850 grams. As a pediatric hospitalist, I thought back to my pediatric residency training, when I learned the adage to “never trust a preemie”—the clinical course of these fragile newborns is simply too unpredictable. And so, heading into a situation that was far beyond my control, and knowing that our son was in the excellent hands of our neonatal intensive care unit (NICU) team, turning off the “medical” part of my brain seemed like a sensible approach to manage what I knew was likely to be a clinical and emotional rollercoaster. Tiny in absolute terms but well-sized for his gestational age, our son did remarkably well in the immediate hours after his delivery. The neonatology team placed lines, tubes, and monitors, but the overall mood was calm when we visited. “He's doing well,” said one of the senior neonatologists, projecting a wise and measured demeanor. “But we're still in the honeymoon period,” he continued, referring to the well-known phenomenon of clinical stability before premature neonates fully encounter the stress of extrauterine life. “Let's take things an hour at a time—then a day at a time—and then a week at a time.” That felt reasonable. We signed up for the MyChart patient portal that night, giving us nearly real-time access to his medical record. Even though his labs were being collected every 6 hours, I felt encouraged by his overall clinical status and tried not to linger on the results. Late the next night, my phone buzzed with a message from my wife in the NICU: “The honeymoon is over.” Our son had developed worsening anemia, acidosis, and hyperkalemia. As he was already on empiric antibiotics for presumed sepsis, the team had started a workup, including imaging for sources of possible bleeding. Through the night, I found myself repeatedly refreshing MyChart, despite fully knowing from my clinical work that imaging results aren't released to families until hours after they have resulted. Fortunately, by morning, we learned the scans were normal, and his condition appeared to stabilize. But the next day brought a different kind of urgency. While our son otherwise remained stable, his serum potassium level had skyrocketed to >8.5 mmol/L, and he was experiencing runs of bradycardia and ventricular tachycardia. Defibrillator pads had been placed on his chest. Having just spent some much-needed time with our other two young children—whose daily routines had been upended by their new brother's unexpectedly early arrival—I raced back to the NICU, careful to balance my eagerness to be at the bedside with the observance of traffic laws. I arrived in the NICU to see the covering neonatologist at the bedside with a large team around him. “Is this a typical complication of extreme prematurity?” I asked, already quite sure of the answer but hoping I was wrong. “No,“ he replied kindly but bluntly. “We're looking at everything, but we're but not sure at this point.” He continued, “Do you have any thoughts? We're all hands on deck here.” Caught off guard by his question, I paused for a moment. Still adjusting to our son's change in condition and the newly heightened intensity of his care, I did my best to step back and shift my mindset to my “work mode”—where, in almost every other situation, rationally thinking through a diagnostic dilemma would have been a comfortable and familiar exercise. The team had already excluded some of the obvious etiologies and had even checked the TPN bag for extra potassium. “Could there be some unrelated endocrinopathy?” I asked. “Like an adrenal issue?” “Maybe,” the neonatologist replied. “Let's think about it.” Fortunately, while the etiology remained elusive, his serum potassium stabilized in response to initial interventions, and the hyperkalemia did not recur. Our son continued to improve, and within a week, he was extubated. I noticed he was becoming a less frequent source of attention from the NICU team—surely a sign of his improving stability. But I also noticed a shift in my own approach at the bedside. I was careful not to overstep, acutely aware that I lacked neonatology training and expertise. But the longer my son's hospitalization progressed, the more twists and turns that ensued with his story, and the more transitions of care that occurred between his covering NPs and attendings, I felt progressively less like an outsider looking in. Rather, as a parent, I came to understand that I had come to know his day-to-day patterns and needs in ways that were difficult to convey during brief morning rounds and clinician handoffs. Around 30 weeks' gestational age, our son became ill with an enterovirus infection. The team listed the labs planned for collection on daily rounds, focusing on general infectious markers. But having witnessed complications of enterovirus myocarditis in young children in my professional role, I tested the waters with my newly emboldened approach. “What would your thoughts be about trending troponins?” I asked, still somewhat tentatively. “That's a good idea,” said the neonatologist. “We'll talk to the cardiology team.” Encouraged that my contribution had been taken not as interference but as part of a shared commitment to his care, I began to ask other questions. Was that low sodium reported from a capillary blood gas, or was it confirmed on serum labs? Was the team aware of the goal oxygen saturations that the ophthalmologist had communicated to minimize progression of retinopathy of prematurity? As the weeks passed and our son's course gradually returned to a more stable and predictable pattern, I gained the space to reflect on the early advice I'd received to “just be the parent.” With the privilege of a medical background, how could I owe my fragile infant anything less than advocating for him using the tools at my disposal? At the same time, I realized that much of what I'd perceived to be the insights of a “doctor parent” were simply those of an engaged parent—regardless of professional background. During my service weeks as a hospitalist while our son was still in the NICU, I paid heightened attention to the comments made by parents at the bedside. Despite detailed chart review in pre-rounding and multiple check-ins for sick patients, I was humbled by how easily even well-intentioned teams can overlook valuable parental observations and input. How much do we really account for the episode of tachypnea the parent noticed in the middle of the night, incongruent with seemingly stable vital signs? Or reports of decreased oral intake that are at odds with what is documented in the chart? As much as we frequently emphasize the role of family-centered rounds in pediatric hospital medicine, this unique moment of overlapping parent and doctor roles made evident how much work remains to achieve shared mental models with the patients and families we care for. After 112 days in the NICU, our son came home. As we navigated his outpatient care, I no longer felt the need to compartmentalize my personal and professional roles. For me, embracing my identity as a pediatric hospitalist has deepened what it means to “just be the parent.” The author thanks Eric Kodish, MD, for his thoughtful and critical review of this manuscript. The author has no funding to report. The author declares no conflicts of interest.