Dilated Cardiomyopathy, Heart Transplant, Intussusception, PTLD Ben Golden Peterson
Ben Golden is an energetic first grader who loves baseball, Fortnite and the dance moves synonymous with the popular video game. Orange Justice is Ben’s favorite Fortnite dance, FYI, and he showed off his moves with zeal during a recent visit to Children’s of Alabama.
One would have thought Ben was a celebrity as nurses stopped in their tracks to greet him with high fives and hugs. They all remember the first time they laid eyes on him as an infant awaiting a new heart in 2012. Four weeks after his birth, Ben was diagnosed with dilated cardiomyopathy, a condition in which the heart becomes enlarged and cannot pump blood effectively. While some infants with cardiomyopathy may go years without the need for a heart transplant, Ben wasn’t so fortunate. His condition grew progressively worse after his diagnosis and he was in grave danger of dying before doctors could locate an appropriate donor.
But after 39 days, a heart became available in California. It was a monumental day not only for Ben and his family, but also the Children’s and University of Alabama at Birmingham (UAB). The cardiovascular services team had recently moved into the Joseph S. Bruno Pediatric Heart Center in the new, state-of-the-art Benjamin Russell Hospital for Children, streamlining the pathway of care for children like Ben.
Ben’s surgery and recovery was not without challenges; it took six hours for the donor heart to arrive from the West Coast. “The combination of these factors – a donor from a great distance, the surgery occurring so soon after the move to Children’s, the heart immediately functioning perfectly and the child experiencing no immunologic rejection or infection problems – all of that together really was quite miraculous,” said James K. Kirklin, M.D., retired professor and former director of the UAB Division of Cardiothoracic Surgery at Children’s.
“The nurses, physicians, and intensivists at Children’s managed this as if they had been doing it every year for the last 10 years,” Kirklin said. “It was absolutely spectacular.”
There were hiccups post-surgery. Ben was diagnosed with intussusception, the most common cause of intestinal obstruction in children between the ages of 3 months and 3 years old, and post-transplant lymphoproliferative disorder (PTLD), the most common cause of cancer after solid organ transplant. Ben underwent several rounds of chemotherapy at Children’s and is now cancer free. He checks in with this Children’s doctors every six months to monitor his progress.
Ben’s parents, Laura and Isaac, are in awe of their son. He’s a miracle, they say, and so are the physicians, nurses and staff at Children’s. “Once we got rid of the cancer, he’s better than ever,” Laura said. “As hard as the journey has been, Children’s eased every step. “We’re at a really happy place right now and we continue to be beyond grateful for what Children’s has done.”