This article was originally published in the San Francisco Chronicle’s Sunday magazine on August 3, 2012 under the headline “Transplant social worker hearts her job.”
Jasmin Mendoza’s January cruise vacation had begun as a dream but ended as a nightmare. Her only child, 7-year-old Abi Morgan-Mendoza, seemed tired on the ship and had begun throwing up. She was so ill by the time the family returned home to Monterey that Mendoza took her to the emergency room. Doctors diagnosed her with the stomach flu and sent her home. In the car, two blocks from the hospital, Abi started wheezing and then became unresponsive. She was in cardiac arrest.
“I didn’t know CPR,” Mendoza recalled with tears in her eyes. Abi was unconscious for 20 minutes.
At age 3, she had been diagnosed with a form of cardiomyopathy, a condition that weakens the heart over time and makes it difficult to pump blood. “They always said she’d have to have a transplant,” Mendoza said. “I just didn’t believe it.”
Late that night, an ambulance delivered Abi to Lucile Packard Children’s Hospital at Stanford University, the only hospital that performs pediatric heart transplants in the Bay Area and one of about 30 in the nation.
Two days later, amid a barrage of doctors and nurses, Mary Burge, the hospital’s heart transplant social worker, entered Abi’s room. Abi hid from her.
“I was afraid she was going to give me a poke,” Abi said.
Instead, Burge brought an empty canvas tote bag for Jasmin Mendoza – for all the medical gear and paperwork she had already accumulated.
“Do you need a toothbrush?” Burge asked Mendoza. “Money for food? A bed at the hospital? Do you need underwear?”
Burge said she first tries to meet the most basic needs of families who have come from around the world seeking heart transplants. After that, she can begin to address more daunting questions: Does the family have medical insurance? A long-term place to stay near the hospital? Does the family have a phone? Reliable transportation? At least one adult who can care for the child and manage dozens of daily medications? If the answer to any of these questions is no, Burge jumps into action.
When 6-week-old Caleb Hackney had to be airlifted from a U.S. Marine Base where his father was stationed in Okinawa, Japan, Burge persuaded the military to transfer the father to a San Jose base so the family could stay together.
When 6-year-old Sierra Bingham was gravely ill waiting for a transplant, Burge helped throw a birthday party in the hospital for her healthy 5-year-old sister and even arranged for Sierra to briefly leave her room for the celebration. (Sierra, who has other siblings with heart problems, received her transplant two days later.)
And after 17-year-old William Wylie-Modro survived a transplant and life-threatening complications that led to brain surgery, Burge helped arrange a high school graduation ceremony for him at the hospital. (Other young patients played “Pomp and Circumstance” on kazoos, and William wore a cap and gown.)
These acts are ordinary for Burge, 71. She has held her post at Stanford hospitals for more than 30 years and is probably the longest-serving heart transplant social worker in the world.
Burge hesitated when asked how many families she’s worked with since starting as an adult transplant social worker in 1978. “Give me a little while, and I’ll write down everybody’s name and count them up,” she said.
The number surpasses 1,000.
Dr. Norman Shumway performed the first successful human heart transplant in the United States in 1968 at Stanford. The patient survived for 14 days. In the coming years, other doctors experimented with the procedure, but most patients did not survive long, and many hospitals abandoned their transplant programs.
But fueled by passion and a grant from the National Institutes of Health, Stanford continued its experimental transplant program. In 1982, the hospital performed a heart transplant on 16-year-old Andy Craze, whose three siblings had all died of the cardiomyopathy that afflicted him. He was one of the youngest transplant recipients at the time, and it was Burge who told his mother that he had been approved for the surgery.
Two years later, Andy’s 2-year-old sister, Elizabeth, received a heart transplant. She became the youngest heart transplant recipient and the first to receive a child’s heart.
Burge recalls the ethical concerns involved with Elizabeth’s surgery. Unlike Andy, she was too young to understand or consent to the procedure, and because doctors had never transplanted a child’s heart before, they were unsure whether it would grow with Elizabeth’s body.
It did. Elizabeth is now 30. She has a job at Facebook and still has the same heart she received 28 years ago. Her brother, too, is alive and well at age 45. And Lucile Packard Children’s Hospital now performs up to 15 pediatric heart transplants a year – among the most in the nation. In May, the same surgeon oversaw three transplants in three days, and Burge worked closely with two of the families.
It was another controversial medical topic – birth control – that gave Burge her first taste of medical counseling in the 1965. While she was a Harvard graduate student studying American civilization, Boston City Hospital hired her to educate women about contraception, which was still illegal in many states. Burge recalls riding her bike to work with a plastic pelvis visual aid in her book bag. She loved the job.
“In a small but very important way, I felt I was making a difference in people’s lives,” Burge said.
After briefly teaching literature at Harvard, Burge moved from Boston to Berkeley in 1977 to pursue a master’s degree in social work. A year later, against her professor’s advice, she opted to work in “the most intense medical situation” she could think of: end-stage heart disease.
Burge’s adult daughter Sara remembers her childhood friends talking about their parents’ bad days at the office.
“My mom’s bad days were different,” she said.
As Burge matter-of-factly puts it, “Not everyone survives to get a transplant, and not everyone who gets a transplant survives.”
When a heart does become available, it can only live outside the body for three to four hours, and it can only travel about 500 miles. Thus recipients must be ready for major surgery on very short notice. If the heart is healthy and the blood types are compatible, the recipient must also be deemed well enough to survive the surgery.
On the “bad days,” Burge said she takes comfort in her daily 2-mile walks to and from work. The quiet solitude, she said, gives her “time to debrief.”
She recalls one girl who was prepped for transplant surgery on two occasions, only to learn that there were problems with both donor hearts.
“My job, in that situation, was to provide comfort and sustain hope,” Burge said.
But sometimes, when the odds seem the most overwhelming, Burge said, “the stars align.” On the girl’s third try, she received a healthy heart.
Dr. Daniel Bernstein, a pediatric cardiologist who has worked with Burge for 26 years, said that Lucile Packard Children’s Hospital usually has between three and 10 children waiting for heart transplants, and the average wait time is between two and four months. For those who receive transplants, 95 percent are still alive after one year, and 93 percent after five years.
‘Where is my heart?’
Abi Morgan-Mendoza survived more than 10 weeks in the hospital on a Berlin heart, a new medical device that performs the heart’s function outside the body. Each time Burge entered her room, Abi demanded to know, “Where is my heart?”
The answer came in early April, and Burge described Abi’s new heart as “a gift” that another child’s family decided to give, “no strings attached.”
Three months later, Burge met with Abi at her weekly clinic visit. This time, the girl who once hid from Burge ran down the hall calling her name. Burge presented Abi with special crayons and paper and suggested she draw a picture to show how she’s feeling.
Without hesitation, Abi grabbed a purple crayon and drew a heart.