Rare heart-lung transplant saves teen
A Chicago teenager with severe heart and lung disease was down to his last hope: finding an institution willing to perform a life-saving heart-lung transplant. That hope was fulfilled at St. Louis Children’s Hospital, and he is now working his way back to the physical activities he loves.
Spencer Kolman, 15, received the rare transplant at the end of a four-year diagnostic journey. It began when he fell short of breath and collapsed while playing hockey in January 2013. Doctors diagnosed him with asthma and then pneumonia before finding the real culprit: pulmonary fibrosis, or scarring in the lungs. It was the result of chemotherapy that had successfully addressed a cancer Spencer experienced as a toddler.
Living in his bedroom on oxygen last year, his lungs and heart became sicker. A Boston hospital determined he needed a lung transplant, but judged that his health was too poor to undergo the procedure. Spencer and his family then went to St. Louis Children’s Hospital and received better news. Pirooz Eghtesady, MD, PhD, chief of pediatric cardiothoracic surgery, and pulmonologist Stuart Sweet, MD, PhD, W. McKim O. Marriott Professor of Pediatrics, said he actually needed a heart-lung transplant, and Eghtesady was comfortable going ahead with the surgery.
Heart-lung transplants are rare for many reasons, says Eghtesady, the Emerson Chair in Pediatric Cardiothoracic Surgery. Suitable organs are in short supply, complication rates are high, and few patients need both organs. “There is not tremendous enthusiasm for the procedure because of bleeding complications and, unfortunately, generally poor outcomes.”
Spencer’s physical condition was deteriorating when he was admitted to the St. Louis Children’s intensive care unit. Thankfully, relief came in about three weeks: The donor organs were on their way.
In a five-hour operation, Eghtesady removed Spencer’s heart and lungs and took the donor heart and lungs — which were attached to each other — and made connections to the airway, aorta, superior vena cava and inferior vena cava.
Today, Spencer is doing well. He thanked his donor family in a letter, telling them he hoped to earn his Eagle Scout award and once again play the trumpet and maybe even hockey.
Highlights
VIDEO/PICTURE SCRAPBOOKS capture the surgical journeys of 30 to 40 St. Louis Children’s Hospital cardiothoracic surgery patients and their families each year. Called “Your Heart’s Story” and produced by Media Production Specialist Rachel Simon-Lee, the videos capture the patient’s and family’s experiences at the hospital through family photos, an edited video of the surgery and voice-over narration. Simon-Lee won a Salute to Excellence in Health Care award from the St. Louis American Foundation for her work. She videotapes all pediatric cardiothoracic operations at St. Louis Children’s; the footage not only enhances her scrapbooks but also serves as a valuable resource for the surgical team and trainees.
AN APP FOR FOLLOW-UP CARE is being evaluated by section surgeons. The app, called Epharmix, periodically texts a child’s family after discharge, asking for information such as weight, temperature and level of oxygen saturation — which parents check via a provided monitor. Staff members flag and address any responses that raise concerns. A company founded by Washington University medical students developed the app. Peter Manning, MD, plans to pursue nationwide testing through the National Pediatric Cardiology Quality Improvement Collaborative.
ANALYZING SAFETY EVENTS in weekly meetings, the St. Louis Children’s and Washington University Heart Center’s Outcomes Committee identifies those events that have potential to cause future harm and addresses them through issue-specific workgroups. Hospital-wide issues are referred to hospital leaders. The committee’s efforts may contribute to St. Louis Children’s low mortality rate of 1.32 percent among pediatric heart and lung patients, compared with the national average of 3.1 percent, according to data from the Society of Thoracic Surgeons National Database.