It was the boy who was unable to speak who ended up teaching me the most.
I was seeing patients in the epilepsy clinic at the Children’s Hospital at Montefiore during my neurology rotation as part of my fourth-year training at Albert Einstein College of Medicine. The attending physician with whom I was working, an internationally renowned pediatric epilepsy specialist with a penchant for attracting exceedingly complex cases, wanted me to observe the end of a patient session with one of the child-neurology fellows.
I entered the patient’s room and stationed myself in the corner by the door. In front of me, a 5-year-old boy sat on his mother’s lap, facing away from me but affording me a perfect view of his beautiful mane of black hair, woven gracefully into a ponytail. Also in the room was the boy’s 7-year-old brother, sandwiched sullenly between his family, the patient’s stroller and the wall, with magnificent locks down his back as well. From the conversation in the room, I gathered that the patient had Lennox-Gastaut syndrome, a severe form of epilepsy that arises in childhood and is usually accompanied by developmental delay and intellectual disability.
My time with the patient was brought to an unexpected halt when the attending decided that he had seen and said enough to leave the fellow to complete the encounter alone, so he whisked me out of the room with him.
“Did you see his face?” he asked when we reached the hallway.
“No,” I admitted, baffled about why this particular question was being posed to me, but realizing at the same time that I had never been in the strange—and, frankly, embarrassing—situation of not having seen a patient’s face during a visit.
“Then go back inside and make sure you look at his face.”
So, as politely as possible, I ventured back in, right up to the front of the boy and his mother. Immediately, I was struck by the glaring microcephaly, or small head circumference, that I had not been able to discern earlier. A feeling of shock overtook me, but I willed myself to flash a smile as I continued to observe the entirety of the patient. The boy had skeletal limbs with joints so contracted that I knew he was incapable of any independent ambulation. I deduced also that he was nonverbal, had significant cognitive dysfunction and was extremely limited in communicative abilities.
I thought about the myriad difficulties the boy’s family faced in caring for him on a daily basis. As a sibling of someone with special needs, I pondered especially the situation of the patient’s brother, sensing he was mature far beyond his years.
The Patient Reaches Out
My brooding was interrupted by the sight of the patient’s hand reaching clumsily for the ID hanging from the kid-friendly ID holder on my white coat. I bent down so he could grab it, anticipating he would derive pleasure in discovering the retractable nature of the ID holder. He tugged until the ID was close enough to him, and then he put it in his mouth. I let him, knowing it gave him contentment. I then reached into my pocket, took out some stickers and doled them out to the boy and his brother. To my delight, the brother’s eyes lit up and a smile crossed his face as he registered that he was finally being included.
And what happened next surprised everyone. The patient opened his arms out to me.
He wanted me to pick him up.
He wanted me.
So, with his mother’s permission, I lifted him off her lap and gently raised him into the air. Sweet giggles emanated from him as I brought him down and then cautiously propelled him upward again and again. Our laughter became one as I realized how much joy the boy brought to me as well. Still in my reverie, I let my eyes dart briefly to the hallway outside, where I saw the attending, who had been watching the encounter, unbeknownst to me, from the doorway. He beamed at me, strode back into the room and proceeded to tell the patient’s mother and the neurology fellow that he would pursue use of augmentative and alternative communication tools for the patient after witnessing my interaction with him.
This realization, that the boy was not so “limited” as we had unfairly surmised, was by far the highlight of the visit for everyone involved. Even the 7-year-old, I knew, could comprehend the life-altering significance of this newfound revelation.
As the meeting wound to a close, I caught a glimpse of the brother taking great care to settle the patient back into his stroller, and I made sure to commend him on being an exceptional brother. He markedly transformed from the glum sibling I had scrutinized earlier, his handsome face now radiating pride, his features aglow with unsullied excitement.
Assigning Value to All Patients
I now recognize the true manner in which my attending measures his self-worth: by viewing the totality of his patients—their value as humans—and journeying outside his confines as a neurologist to provide them with the richest, most satisfying lives possible. He certainly provides first-rate medical care to his patients but he’s driven by something larger.
Medicine, I am coming to understand, should never be about relegating oneself to accepting the status quo.
Every patient deserves an advocate and a chance for more, irrespective of appearance, diagnosis or level of functioning. Now, the question of “What else can I do for this patient and the family?” permeates my every interaction as I strive to become more proficient in patient- and family-centered care.