Heart Transplant: Wilfre's Story

Wilfre and his care team

It was a week before Christmas and only a few hours after 14-year-old Wilfre from Pinellas Park entered the Emergency Center at Johns Hopkins All Children's Hospital, when he took a turn for the worse. The seemingly healthy soccer player was suddenly put on the most aggressive form of life support called extracorporeal membrane oxygenation (ECMO). 

His heart was failing him. Time was of the essence.  

“I had shortness of breath, I couldn’t breathe well, I had been throwing up and had diarrhea,” recalls Wilfre. “I was really sick.”  

He had never felt this way before. But he was in the right hands. Meagan King, R.N., and Daren D. Coleman, a pediatric paramedic, immediately noted an elevated and rapid heart rate with an abnormal rhythm, low temperature and rapid breathing.  

That prompted Danielle Hirsch, M.D., an emergency medicine physician in the Johns Hopkins All Children’s Hospital Emergency Center on duty that day, to order a chest X-ray and an electrocardiogram (EKG).  

“The results showed his heart was big and it was not functioning normally,” Hirsch says. “His vital signs were becoming more unstable, so we knew we had to get his heart out of its irregular rhythm. He had to be shocked a total of three times, and because the nature of everything going on around him, his oxygen levels dropped and he needed to be intubated.” 

He went into cardiac arrest for two minutes. The EC team stabilized his heart rhythm, while the pediatric cardiology team and cardiovascular intensive care unit (CVICU) teams were on standby to work hand-in-hand in Wilfre’s care. Cardiac surgeons swiftly placed Wilfre on ECMO to keep him alive. 

“Everything happened so fast, I was very scared,” says Wilfre’s mom, Maria. “It felt like the world stopped — the moment was very terrible for me.” 

He wasn’t out of the woods yet, but the CVICU team, under the direction of cardiac surgeon James Quintessenza, M.D., now had him under their care and watchful eye. 

“The walls get thin and the heart chambers enlarge. That’s a function of deterioration of the heart,” explains Quintessenza, who is co-director of the Johns Hopkins All Children’s Heart Institute. “It looked like it had been going for days, weeks, maybe months, but Wilfre hit a critical point where his heart just couldn’t keep up.” 

Wilfre was converted from ECMO to a temporary left ventricular assist device because his lungs didn't need the support, so he was instead put on an artificial pump to support his left ventricle, which was the identified problem area. He stayed on this for 10 days and received an echocardiogram every other day in which the pump was turned off to see how his heart was functioning by itself. It was a waiting game to see if his heart would bounce back. If not, a heart transplant or a permanent pump would be the only two treatment options. 

“We gave that heart a good chance of getting better, but it just never quite looked like it was going to,”  Quintessenza says. “But all of the parts of the Heart Institute and heart transplant program were in place, there’s a whole village involved.”

Because of his age and size and the urgency of his situation, a donor heart became available quickly. There is a prioritization process that helps determine where you are on that waiting list.” 

Within four days, Wilfre had a match. On Jan. 6, after about four hours in the operating room, Wilfre had his new heart, and second chance at life.  

“I am kind of excited because the doctors told me with this new heart, I’m going to have more energy. I want that energy,” Wilfre says. 

He might even be cleared to ease back into soccer again in about six months, with full clearance to play a year post-transplant. His heart looked great at his first follow-up appointment with Alfred Asante-Korang, M.D., FACC, a pediatric cardiologist who has cared for patients post-heart transplant for more than 20 years.   

Wilfre will have frequent visits to Asante-Korang to make sure his heart isn’t showing signs of rejection since his body is trying to recognize this new organ. It will be important for him to take immunosuppressant medications and steroids, which can often result in the need for high blood pressure medicine and antacids, so he will be monitored closely with adjustments made as needed. Heart transplants involve lifelong follow-up care, but in time, the appointments will become less frequent.  

“We are very happy, he’s done very well and he seems to be a good boy,” Asante-Korang says. 

As for the Emergency Center team of physicians, nurses, paramedics, residents, pharmacists who sprang into action as Wilfre stepped through the door, they’re overjoyed to see him walk out of the hospital, a month later, with a smile on his face. It is a new year with a new heart. 

“I am happy to be alive with a brand new heart,” Wilfre says.  

Johns Hopkins All Children's Heart Institute

The Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida, provides expert, comprehensive cardiac care to children and young adults with congenital heart conditions, serving families throughout the greater Tampa Bay area and beyond. Your family needs an experienced team to support you through your child’s treatment and long-term care and development.