In April 2007, Peyton Penrod, an otherwise healthy 2-year-old boy, was flown to Johns Hopkins Hospital, his heart on the verge of failure. Doctors and nurses in the Pediatric Intensive Care Unit stabilized him, but his future was uncertain.
A team of pediatricians diagnosed Peyton with idiopathic cardio myopathy -- heart inflammation with no known cause. The pediatricians came to a bleak conclusion: Peyton needed a heart transplant, or he would die.
Luca Vricella, Hopkins' chief of Pediatric Heart and Lung Transplantation, explained this treatment option to Peyton's parents. Vricella is one of only three surgeons in the state of Maryland who performs pediatric heart transplants.
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Choosing between transplantation and death is a horrifying decision for parents to make. Choosing transplant means the family must buy into expensive and emotionally taxing years of chronic disease management, hoping for long-term survival.
In his five years at Hopkins, Vricella says that few parents have ever opted not to go through with a transplant, and they were generally parents of newborns who had yet to bond with their child.
"A kid like Peyton, you've been with him for two years. He's really part of the family. It's very rare you'll find a parent who won't do it," said Vricella.
In an emotional meeting, overwhelmed by their child's sudden brush with death, the Penrods gave the doctors permission to list Peyton for a transplant.
"Parents in this situation are sometimes incapable of making a decision, and you have to just put it all out on the table, and guide them," Vricella said.
There are no guarantees in transplantation. Patients must be able to withstand the stress of a major operation, and they sometimes die before an organ becomes available.
Speaking from Peyton's hospital room weeks into their ordeal, Melissa Penrod, Peyton's mother, said that "the hope and belief that he'll be with us longer makes it worth it."
Pediatric hearts are especially rare. In 2007, the year Peyton was listed for a transplant, there were a scarce 462 pediatric heart donors, and 206 under the age of 10. In contrast, in the same year, 472 pediatric patients were listed for heart transplants, and 335 of those were under age 10, according to United Network for Organ Sharing, or UNOS.
While waiting, parents grapple with the understanding that their child's chance at life stems from another child's death. Since 1994, UNOS has tracked the circumstances of donors' deaths, and most pediatric donors die in motor vehicle accidents.
As in other organ transplants, when replacing a heart doctors must determine if the tissue and blood type of the donor match that of their patient. They test the heart's function with an echocardiogram, and match the size to the recipient. In pediatrics cases, Vricella said, the size can vary by about 30 percent.
"A good heart is one that's not been traumatized, so has not had prolonged CPR, but beggars can't be choosers," he said.
Kids' hearts are more resilient than those of adults, Vricella said, but he gets worried if a heart is ischemic, deprived of a blood supply, for more than four hours.
When all these elements combine and they have a match, Vricella will respond to a pager at any time day or night, and the family must be ready, too.