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Heather Maeding and her seriously ill 9-year-old son, Luke, had just made the six-hour drive from Children's Hospital of Pittsburgh of UPMC back to Nazareth, Pa., home when she received a phone call from the hospital transplant coordinator that would necessitate their immediate return.
As mother and son flew back to Pittsburgh, a procurement team was dispatched to retrieve the lungs in a race to transplant them within a four-hour window. "I'll bet he was in the operating room within an hour after he got to the ICU," says Peter Wearden, MD, PhD, Pediatric Cardiothoracic Surgery, who performed the double-lung transplant.
Today, Luke is adjusting to living the active life of a child. In fact, less than two months after his transplant, he was playing baseball with his Miracle League of the Lehigh Valley team, the Pirates. "He made it to his last game and he ran to first base," says his mother. "He was so happy."
Luke first came to Children's Hospital in 2007 after his mother met Geoffrey Kurland, MD, medical director of the hospital's Pediatric Heart and Lung Transplantation Program, at a Childhood Interstitial Lung Disease Foundation (ChILD) conference in Ohio. She had become involved in the nonprofit, which supports and educates families of children with rare lung diseases, as part of her search for answers about Luke's disease.
Heather and Glen Maeding had taken Luke to four eastern Pennsylvania hospitals, including The Children's Hospital of Philadelphia, but a precise diagnosis remained elusive. Prescribed treatment that included high-dose steroids had led to other serious health problems including seven fractured vertebrae, nonfunctional adrenal glands, and insulin-dependent diabetes. Meanwhile, his lung disease was getting worse.
Following the ChILD conference, she and her husband decided to bring Luke to Pittsburgh for a lung transplantation evaluation. They knew transplantation would be necessary if Luke's lung disease continued to progress. "We felt comfortable because Dr. Kurland is part of that consortium," she says. "And we felt it was important to travel that distance to go to someone who knew about these rare lung diseases."
Physicians at Children's, like others before them, were unable to determine a precise diagnosis. "It is much better for us if we have a diagnosis that we know, that agrees with what the patient looks like, and that we understand the prognosis for," says Dr. Kurland, also of the Pulmonary Medicine, Allergy, and Immunology Division. "But that isn't always the case. We did not know Luke's precise diagnosis. But we knew a lot of things."
What they did know was that Luke's life had been difficult. He was born at 26 weeks gestation and spent three months in the neonatal intensive care unit of St. Luke's Hospital in Bethlehem, Pa., before going home on oxygen with the Maedings as a foster child. They later adopted Luke. From birth, he had chronic lung problems related to prematurity. As an infant, he developed influenza. He had undergone a lung biopsy and had abnormalities of formation of or damage to the lung. His need for oxygen continually increased, and although he could move air in and out of his lungs well, his oxygen delivery was poor.
The conclusion drawn was that his lungs had failed to mature. "He grew in size, but his lungs just didn't catch up," says Jonathan Spahr, MD, Luke's pulmonologist at Children's. "The best analogy I heard was that Luke had lungs like a tree that never bloomed."
The decision was made to postpone Luke's transplantation in favor of continuing treatment in the hope that his lung tissue would start to grow with him. But by 2010, he was wheelchair-bound and needed constant oxygen and BiPAP support.
"We did his lung transplant for his quality of life," his mother says. "Even though he was alive, he wasn't really living and he knew that. He could only watch his brothers and sisters play."
The six-hour procedure began with the removal of Luke's diseased lungs, a process that usually begins once the transplant team receives word that the plane carrying the donor lungs has landed in Pittsburgh. Removing Luke's lungs required a bit more time due to scar tissue associated with a lobectomy that had been performed years earlier at another hospital, Dr. Wearden said. Luke was placed on a heart-lung machine.
The donor lungs were separated at a back table in the operating room and were implanted one at a time. Each required three anastomoses to unite it with the pulmonary artery and veins, as well as the bronchus.
Luke's immunosuppression regimen involved giving steroids prior to surgery, then thymoglobulin during the first five days following the operation, and then tacrolimus, the primary immunosuppressive agent.
Luke spent the next seven weeks recovering, several of them in Children's state-of-the-art Cardiac Intensive Care Unit. Luke had his share of complications: He had to return to the operating room to have a blood clot removed from his chest. And when he had difficulty breathing post-transplant, Dr. Wearden noticed on an x-ray that Luke's right diaphragm was lower than his left.
"He didn't seem quite right to me," he says. "When I took him back to the operating room to pull the diaphragm down and tighten it, I realized [that] he had had a lobectomy (at another hospital), and his diaphragm had become scarred. I freed up the scar tissue so he would have more space there and his new lung could expand fully. Once we did that, Luke just started to soar."
Successful transplantation will not end Luke's need for heavy medication and regular visits to Children's. He must continue to take tacrolimus to stave off rejection. To make sure there are no signs of rejection, he needs biopsies and close surveillance of his lung function. He also needs to condition his body after so many years of inactivity.
"He's actually done quite well, and his prognosis so far is pretty good," says Dr. Spahr. "His challenges early on were rehabilitation and they continue to be that. His legs, he told me, got pretty sore after transplantation. He could do the walking as far as his lungs were concerned, but his legs just weren't used to it."
Today, Luke walks around his neighborhood, weather permitting, and works out on a treadmill when it doesn't. He hikes with his family, has resumed his baseball career, and can play hide-and-seek with his brothers and sisters without leaving a trail of oxygen tubing behind. "Luke is an amazing patient. He's a strong boy," says Dr. Wearden. "I tell these kids they're my heroes. They go through a lot, and what they go through is not easy."
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