Nearly 200 children are awaiting heart transplants in the United States, but many will die before a suitable organ becomes available. Penelope Gordon was among those youngsters facing an uncertain future when she was airlifted to Mattel Children's Hospital UCLA after becoming desperately ill following a visit to her great-grandparent's house.
At UCLA, doctors diagnosed the 1-year-old with dilated cardiomyopathy - her heart was twice its normal size with only 5 percent of function. Dilated cardiomyopathy is life-threatening, and the child's case was urgent. Her physicians tried medications; still, Penelope's heart continued to fail. She was placed on a pediatric heart-lung machine, but that could sustain her for only two-to-three weeks before grave complications set in. What she needed to survive was a transplant.
Because donor hearts are in short supply - particularly for infants and children - Penelope needed a bridge, a child-size device that could take over the pumping function of her damaged heart and keep her alive until a suitable organ became available. That bridge was the Berlin Heart, a revolutionary new ventricular assist device designed specifically for children, from infants to teenagers.
As one of the country's foremost heart-transplant programs, as well as a leading research and teaching institution, UCLA is among a limited number of U.S. medical centers that are implanting the Berlin Heart under terms of a Food and Drug Administration (FDA) investigational device exemption study.
Because the Berlin Heart is relatively compact and mobile, Penelope was not tethered to her hospital bed. And she remained awake and alert. Her parents were able to put her in a wagon and take her out of her room for trips down the halls and outside. That mobility enables "the children to essentially lead a somewhat normal existence and allows all their organs to improve, such as their kidneys and their lung function, before the transplant," says Brian Reemtsen, M.D., chief of pediatric congenital heart surgery at UCLA.
Eight months after receiving the Berlin Heart, Penelope, now 2 years old, got her new heart. Two weeks later, she was out of the hospital.
"Penny's doing fantastic," says Juan Alejos, M.D., medical director of the Pediatric Heart Transplant Program. "Granted this is going to mean medications and doctors' visits, but I think that the Berlin Heart basically saved her life."
For her parents, Stephen and Jina Gordon, Penelope's survival is nothing short of a miracle. Her father says: "That was so good, having our daughter back, oh so good."