It was around Christmas last year when William Wylie-Modro and his family realized something wasn't right. The 17-year-old high school senior had been born with a heart abnormality that left him with two chambers rather than four, and his health had begun a precipitous decline that winter.
When a physician at Lucile Packard Children's Hospital informed his family that a heart transplant was his only option, they were stunned — and utterly unprepared for the realities such a decision involved. Luckily they had someone in their corner from day one.
"Mary is just a walking angel," said Sheron Wylie-Modro, William's mother.
She was referring to Mary Burge, LCSW, Packard Children's pediatric heart transplant social worker. For more than 30 years Burge has attended to just about every non-medical issue that comes up while preparing for and recovering from the procedure. For patients and their families, she's something of an all-purpose fixer.
"She sorted out our insurance situation. She worked out my accommodations. She wrote a letter to my husband's work, explaining that he needed to be away for a period," Wylie-Modro said. "She even worked with William's school to make sure he'd be getting credit for certain classes."
Here she stopped not because she ran out of examples but because William started interjecting his own.
"I play a little guitar, and when she found out she arranged for the hospital's guitarist, Jeff Buenz, to play at my room," he said. "Later, she helped me apply to the Make-a-Wish Foundation, which gave me a new computer for college. And she helped me find scholarships I could apply for, too."
If Burge sounds like a miracle worker, she's had time to hone her role. Just as Stanford's heart transplant program is the longest continually active transplant program in the world, Burge is the longest-serving heart transplant social worker. Since starting in 1978 — she first supported adult transplant patients — she has devoted herself to the array of emotional and logistical needs that accompany the procedure. Concerns start well before the transplant is scheduled and can last years after it. She's still in touch with Elizabeth Craze, who made history in 1984 by becoming the first child under the age of 5 to receive a heart transplant at Stanford. (The first successful U.S. adult heart transplant also was performed at Stanford, in 1968.)
"This procedure requires so much maintenance afterward," Burge said. "A surgery can be successful, but if the patient and family don't adhere to the complicated medication regime and follow-up treatment, it won't be a successful transplant. As transplant social workers, we're a big part of the decision-making process in regard to the kind of treatment a patient gets. There are many factors impacting whether a patient and his or her family will cope well, or at all, with a heart transplant."
Upon meeting a prospective patient, Burge conducts a psychosocial assessment to identify risk factors that could impact eligibility. She also starts answering as many questions as possible.
"So many familiar things are taken away from a patient — a sense of being in charge of your own body, your own fate, your privacy. Those can be really hard for anyone, especially kids. Right away they ask, 'What is going on? Why am I here? When can I go home? Who are all these people coming into my room? Why can't I wear my own clothes? Why can't I be in my own bed?'" she said. "Parents want to know everything, too. They want you to predict the future. And because so many are coming from elsewhere — another hospital, another part of the country, another country — they want to know where they're going to stay, how they'll manage financially, about their job, about their other kids, how they're going to cope."
But it's not just the patients and their families who find Burge indispensable.
"Consistently the physician-surgeons say, 'We couldn't do this without her,'" said Jack Komejan, LCSW, director of social services. "She's an amazing, calming, delightful person, with a vast repository of healing stories from her years of service. She's truly a master of her art."
For Burge, 71, the job is different every day and no less profound than it was on her first.
"Seeing kids able to do things they couldn't do before still makes me get teary," she said. "They start out weak, frail, slumped over. Then, after the transplant, there's the ventilator, the scar, the chest tubes. But then you see them shedding all those things, and sitting up straighter, and then walking and eventually going to school, riding a bike, on a skateboard, doing ballet. It's incredible. And I can tell these stories to new families, and it's comforting to them."
So it was with William and his family. On May 4, in a 10-hour procedure, he received his replacement heart. Today his recovery is going extremely well. William has become a vocal advocate for organ donation and has been accepted at UC San Diego to study engineering in the fall of 2013. A month after his transplant, Burge celebrated William's graduation from high school, held in the hospital school.
"She brought me a stick-on tie," William said with a laugh. "It said, 'I graduated. I accept cash.'"
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