I can’t picture going home and leaving him
EJ Wright dressed up as a pirate, strapped a medical mask over his face and took the elevator down one floor to join other young patients for treats this Halloween. Months later his mother potty trained him in his hospital room because – for now – the MUSC Children’s Hospital is home, and it was time. And when historic snow blanketed Charleston in January and paused time for a few days, doctors gave EJ clearance to take a brief break from his nonstop infusions so that he could go outside.
“I can’t picture going home and leaving him,” said his mother, Jazmin Walker. The way she looks at it, each day spent in this room in the MUSC Children’s Hospital brings her son closer to the heart he needs.
And with help from some friends, they make the most of those days – preserving traditional childhood experiences in a nontraditional setting.
EJ was born with hypoplastic left heart syndrome, a condition in which parts of the left side of his heart failed to develop completely. Walker gave birth at MUSC, and tiny EJ underwent his first surgery at five days old and his second surgery at six months old.
Before EJ’s birth, cardiac child life specialist Emily Wiebke worked with Walker, providing emotional support and preparing her for delivery of a baby she might not hold for weeks. As EJ grew and thrived month after month, Wiebke transitioned her work to helping EJ with simple movements and staying stimulated with teethers, mirrors and other infant toys.
Then EJ went home and grew into an energetic, PAW Patrol-loving toddler. As his third and final surgery approached in 2017, he seemed uncharacteristically tired, and his face began to swell. When Walker brought EJ in for an evaluation, she learned the unthinkable: Her son’s heart was failing.
The MUSC Children’s Health Heart Center offers the only heart transplant program in South Carolina. MUSC ranks among the top 20 programs in the country for pediatric cardiology and heart surgery in the most recent U.S. News & World Report. For that reason, Walker never considered bringing her son anywhere else. But in order to stay highest priority on the transplant list, EJ had to go inpatient. So on Sept. 4, mother and son arrived at MUSC with suitcases.
And Wiebke, his pal from infancy, was there to help with the transition. Since EJ spends 23 hours a day hooked up to intravenous medication, Wiebke makes sure that his pole never stands in the way of playing like any other 3-year-old.
“His adjustment is really quite optimal for how long he’s been in the hospital,” Wiebke said. “EJ has become this really beloved child who walks down the halls and doesn’t know a stranger.”
EJ’s heart transplant call could come tomorrow, and it could come in a year.
In the meantime, his rides his Big Wheels bicycle in circles across the linoleum floor, shoots hoops with the small basketball net in the corner of his room and plays with his favorite PAW Patrol toys. He showcases his ability to whistle to the revolving door of doctors, nurses and technicians who have fallen in love with him since his arrival.
And with smiles and energy that belie his chronic condition, he waits.
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