Fighting Pediatric Disease: Not Just Kid Stuff

Breathing, 24/7

Zachary Chamberlin with his dogs.

Zachary Chamberlin’s premature birth in 1982 would eventually cost him his lungs. As a newborn he gasped for air, wheezing rapid, shallow breaths. His ribs and chest were sunken in—hallmarks of underdeveloped lungs and a disease called bronchopulmonary dysplasia. Most frightening were the recurring episodes when Zach would turn blue, caused by low oxygen levels in the baby’s blood.

For the next three years, Zach depended on a ventilator to breathe. He graduated to a portable oxygen tank at age 3, which he needed round the clock until he was 17. Zach’s parents—Fred, an appliance repairman, and Patty, a medical office manager—hired a nurse to accompany Zach to elementary school in Glen Burnie, Md. At home, as Zach matured, his two older sisters would help out more with his care. What he lacked in air, the family tried to compensate with love.

All things considered, life was going fairly well for the diminutive young man. Zach’s oxygen tank fit into a rolling briefcase. And by middle school, he’d found the perfect backpack to accommodate it. But with each year, Zach’s lungs worsened.

When Zach turned 14, his pulmonary physician at Johns Hopkins, Peter Mogayzel, told the family it was time for Zach to be listed for a double-lung transplant. Meanwhile, Zach started 9^th grade, but walking between classes left him too winded to concentrate. He had to drop out. For the remaining high school years, he was home schooled.

Three years later, still awaiting new lungs, Zach managed to complete his studies and earn a diploma. He was reunited with his classmates on graduation day—a triumph for the entire Chamberlin family. But Zach’s condition deteriorated rapidly. And the family’s hopes were shattered twice after being called in for a transplant, only to learn—after Zach was put to sleep—that the lungs were unsuitable.

One day in October, 1999, the Chamberlins received a call from the producers of ABC TV’s “Hopkins 24/7,” a seven-part documentary on daily dramas at the hospital. They wanted to interview the family and follow them to Hopkins when the next set of lungs became available. Although hesitant, Patty thought participating might help raise awareness about organ donation. “It turned out to be a welcome distraction, too” she recalls.

A month later, the family received a call from to come to the hospital for a transplant. Amid all the media attention, the Chamberlins were expecting another false start. But transplant surgeon Stephen Yang was pleased with the match. “I felt like a kid opening a great present on Christmas Day,” he says about inspecting the donor’s lungs. Six hours later, Zach was wheeled into recovery to a cheering family and ABC crew. The experience was captured on film and aired in September, 2000.

Missing from the documentary was Zach’s difficult journey to better health. During surgery, his diaphragm had become paralyzed, and he required a ventilator for eight months. He spent three weeks at Hopkins, followed by three weeks at a rehab center. But in the months that followed, he gained 50 pounds and played baseball that summer.

“The first few years after the transplant were really rough,” admits Zach, now 23. “It’s nice to be able to breathe without a vent and have more energy,” he says.

Zach credits his family for his recovery, saving the highest praise for his parents: “No matter what happens, they seem to get through everything and become stronger people. I want to be just like them.” And he’s quick to recognize Hopkins nurses and doctors.
“I look up to them and wouldn’t have survived without their care,” he says.

At 19, Zach got his driver’s license. He drives his beloved 2003 Toyota Tacoma to run errands, including a stop three times a week at the school his 10-year-old niece attends. He stays with her until her mother comes home from work. When time permits, Zach hits the mall near his house to shop for clothes and CDs. At home, he plays electric drums, a gift he received at age 14 from the Make-a-Wish Foundation. He also enjoys watching movies and spending time with his family. And he stays in touch with the ABC crew.

Although Zach has lingering health problems, he leads an active life. Now that he’s an adult, Zach has transitioned to the Adult Lung Transplant Program where he is cared for by new doctors and transplant coordinators. But he makes a point of visiting the pediatric team whenever he’s at Hopkins Hospital. Given how much of his childhood he spent with them, they’re like a second family.