Finding a Match for a Boy With a Bad Heart

July 17, 2008— -- 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.

The Waiting game

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.

High Stakes, Complications

In May 2007, everything lined up, and doctors determined they had found a match for Peyton. The transplant team swung into high gear. Immediately, Vricella and a cardiac fellow boarded a plane to Indiana to retrieve the organ. Meanwhile, the team at Hopkins started prepping Peyton and his family. Constant communication ensures that the team at Hopkins is ready to implant the heart as soon as it arrives in the operating room.

But things don't always go as planned. During multiorgan recoveries, the donor can suffer massive blood loss and other complications. Small hospitals are not always equipped or prepared to deal with multiorgan recoveries in children. When Vricella arrived, he said, the OR team was "behind the eight-ball" with resuscitation and the heart arrested.

"Basically we just witnessed a heart die in front of our eyes. There was nothing I could do," he said.

Surgeons are often stereotyped as unfeeling medical machines, but a year after this experience, Vricella was still emotional.

"I've never been so upset in a procurement," he said. "I literally stormed out of the room, aborting the operation. It was just terrible. I just kept thinking of them back [at Hopkins] waiting for this heart."

Second Chance for Life

In mid June, more than a month after the failed procurement, they found another heart for Peyton. While the Penders were lucky, a recent tragedy was weighing on all the doctor's minds.

"Two bad things can occur during a recovery: One is that the plane crashes, two, you bring back a bad heart," Vricella said.

Only ten days before Peyton received the call about the new heart, a plane carrying a University of Michigan transplant team en route to help another recipient, crashed. Everyone onboard died.

Unable to control the fate of their aircrafts, surgeons must concentrate on bringing back a working heart, a particularly difficult task with pediatric organ recovery. Peyton's was no exception.

When recovering adult hearts, Vricella will assist a cardiac fellow, but for a pediatrics case, he performs the operation from start to finish.

"A child's heart is very delicate, and it's like a parachute," he said. "If you don't fold it properly, it won't open."

Time works against the transplant team. As soon as Vricella stops the heart, the minutes add up quickly.

"It's the total time it takes to excise the heart, pack it, travel back to Johns Hopkins, unpack it and get it into our patient," he said.

Although Peyton's new heart was flown in from another state, it was ischemic, or had a deficient blood supply, for only 207 minutes before Vricella and his team shocked it back into a normal rhythm.

The Long and Winding Road

According to Vricella, transplant can improve a child's quality of life dramatically, but he said, "you trade one illness for another."

Transplant patients must take immuno-suppressants for their entire lives, and these drugs have nasty side effects, which include renal failure, high blood pressure and cancer. Chronic rejection, which the drugs help diminish, results in heart disease.

Ultimately, many pediatric heart transplant patients will need to be retransplanted. Others die from complications before their new hearts stop working.

It's a relatively new field; the first successful operations were performed in the mid-'80s. "Lord knows where we'll be in another 10 years," Vricella said.

He hopes that new immuno-suppressants will allow children to live longer with fewer complications. He also surmised that in the future, surgeons will develop a fully prosthetic heart, or a way to transplant from an animal.

For now, Peyton is a happy 4-year-old. Amazingly, his heart will grow as he grows, and, it's hoped, sustain him for many years to come.