During the same time I prepared for epilepsy surgery, I worked as a pediatric resident at the University of Wisconsin. Although the pressures of residency were challenging while I dealt with my own illness, the tragic perspective that I gained while caring for hospitalized children kept me focused and centered. The following is an excerpt from The Sacred Disease recounting one of my most memorable nights in the PICU.
When pediatric residents were assigned to be on call in the Pediatric Intensive Care Unit (PICU), we stayed overnight in a small, cramped call room in the hospital and spent many sleepless hours standing over the beds of the smallest, most fragile patients in the Children’s Hospital. I was on call one night shortly before my scheduled inpatient stay for EEG monitoring.
Soon after I arrived to report for my shift, I was called into young Makayla’s room.
Makayla was a four-year-old with symmetric braids of thick black hair and glistening dimples that marked the middle of her cavernous cheeks. She was diagnosed with a pediatric tumor of the eye called retinoblastoma two years previously, shortly after her father passed away from the same disease. Makayla’s initial round of surgery and chemotherapy was successful, even though one of her bright, mahogany eyes was removed to rid her body of the tumor. Several months before her admission to the PICU, Makayla began complaining of pain in her hip and neck. A CT scan confirmed metastasis of her original tumor to several areas throughout her body.
When I entered Makayla’s hospital room, she was curled tightly in her mother’s lap. Her mother shielded her protectively with her long arms and strong shoulders. Though she cradled her baby in a loving embrace, a mother’s love wasn’t enough to reverse the slow decline in Makayla’s heart rate and shallow breathing. Makayla’s cancer had advanced inexorably enough that she was losing her grasp on life. A nurse was present to administer medications to ease her passage into another world. It would be my job to pronounce her dead.
Makayla’s mother wept quietly as she held her baby and monitored the florescent green line that recorded her heart rate on a monitor nearby. I stood discretely in the corner and tried to blend in with the wallpaper, feeling like I was eavesdropping on an intensely personal moment. A hospice nurse held Makayla’s mother’s hand. Her gentle sobs became louder each time the child’s fragile breathing slowed. Makayla’s bright fingernails, polished a fire engine red, seemed out of place in the somber room.
We stood that way for what seemed like forever. At last, Makayla took a final sigh to announce that she had fought long enough. The bouncing green line turned flat, and the child’s mother wailed and cradled her daughter close to her cheek and cried, “My baby my baby my baby.” I made a note in Makayla’s chart. Time of death: 12:03 A.M. Death was stronger than a pristine child with bright red fingernails and an insatiable cancer.
The familiar vibration of the pager on my belt abruptly pulled me from my thoughts. The story ended in Makayla’s room, but down the hall, the Med Flight team wheeled in another patient in need of acute care. I jogged down the curved hallway and found the attending physician talking quickly to the assembled group at the same time he used an inflatable bag and mask to breathe for an unconscious patient.
“Sixteen-year-old female who ran into a tree while skiing in a race approximately two hours ago. The victim was wearing a helmet but the helmet was crushed during headfirst impact with the tree. The patient was found unconscious and unresponsive on the hill and no longer breathing independently. She was intubated immediately and flown here.”
I studied the patient’s condition while I listened.
“In-flight management included ventilation and fluid resuscitation. So far, we haven’t been able to get any purposeful responses with stimulation. She has an open head wound with visible extruding white matter. Brain swelling and cerebellar herniation is a significant concern.”
As soon as the gurney stopped, a swarm of doctors and nurses flocked to the patient. “Let’s move her over.” Dr. Brady, the attending PICU physician, gestured to the larger bed in the hospital room.
“On my count. 1 – 2 – 3!”
We slid the patient as gingerly as possible to the bed that would become her home for the next three weeks. I inspected the devastated teenager lying before me as the energy and chaos in the room calmed.
Sarah was sixteen but she didn’t look a day over twelve, even when shroud with a cluster of medical devices, splints, and dried blood. A turban of bloody gauze clung to her head, and her neck and body were strapped to a rigid board to ensure stability of her spine. Sarah’s eyes were small slits of eyelashes hidden in a sea of swelling and bruises that had previously been her youthful face. There were several untouched locks of caramel colored hair that escaped and flowed down to her shoulders just outside the rigid confines of the cervical collar and head dressing. Looped purple pen strokes marked an unknown phone number on her hand, a remnant of the carefree teenage existence that was crushed to pieces along with her skull against that tree.
We hooked Sarah to the monitors and ventilator in the ICU and inspected her wounds while we waited for the neurosurgery team. She would need emergency surgery to stabilize the swelling in her brain and decompress her skull fracture. We watched her vital signs with trepidation.
Moments later, I tore my eyes away from the monitors around Sarah’s bed and turned to see a cluster of neurosurgeons jogging down the narrow path to the ICU. Their white coats floated behind them as if they were galloping on clouds as they pushed forward to the girl’s room. My shoulders relaxed and my breathing eased when the neurosurgery team wheeled Sarah down the hall to the operating room. Makayla would not live to see adulthood, but Sarah’s future remained a possibility. For this, at least, I was hopeful.
In one night, I met the Unimaginable, Unavoidable, and the Unexpected. Two beautiful girls’ lives altered or ceased while most of Madison slept. Weeping, I walked the lakeshore path to my car. I cried in frustration at how helpless I could be even when cast in the “helper” role. I also was ashamed of my obsession with my own illness. Seizures were frustrating and unpredictable, but I still woke up each morning to welcome the promise of a new day. Anticipation and expectation were still mine to enjoy. Makayla and Sarah now embodied only golden memories or fiery regrets of moments gone tragically awry. I dried my tears and lifted my chin to the sun as I filled my lungs with the cool, early spring air. It was a new day, and I was acutely grateful to be part of the world.