Patient Story
Heart Transplant: Wilfre's Story
Patient Story Highlights
- Wilfre was admitted to the Emergency Center at Johns Hopkins all Children's Hospital and put on ECMO life support.
- The Heart Institute and Heart Transplant Program were key in helping him get a match for a new heart.
- Wilfre has monthly follow-up visits to the Pediatric Heart Transplant Program clinic.
It was a dream come true for 15-year-old Wilfre: making the varsity soccer team as a freshman last fall.
But just over a year ago, that hope was looking bleak for the soccer star. His life was on the line.
A week before Christmas of 2020, the Pinellas Park teen entered the Emergency Center at Johns Hopkins All Children's Hospital. The seemingly healthy 15-year-old took a turn for the worse and suddenly needed the most aggressive form of life support called extracorporeal membrane oxygenation (ECMO).
His heart was failing him. Time was of the essence.
“I couldn’t breathe well. I had been throwing up and had diarrhea,” recalls Wilfre. “I was really sick.”
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 (EC) 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.”
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.
“It felt like the world stopped — the moment was very terrible for me,” says Wilfre’s mom, Maria.
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 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.
“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.”
Within four days, Wilfre had a match. On Jan. 6, 2021, after about four hours in the operating room, Wilfre had his new heart and a second chance at life. A few days later, he was passing a soccer ball in the hallway of the CVICU with the very doctors who saved his life.
“It was truly incredible to see him kicking the soccer ball a few weeks after he was literally a heartbeat away from not being with us,” says Quintessenza.
Today, Wilfre is doing great with no symptoms and is back on the soccer field playing varsity soccer at Dixie Hollins High School. The sport has been his passion since he was 7 years old, and it’s a big part of his life.
Currently, Wilfre has monthly follow-up visits to the Pediatric Heart Transplant Program clinic with Alfred Asante-Korang, M.D., FACC, a pediatric cardiologist who has cared for patients post-heart transplant for more than 20 years. Heart transplants involve lifelong follow-up care, but in time, the appointments become less frequent.
“Wilfre is the perfect transplant patient who takes his transplant medications without fail, and he is now only taking four medications,” Asante-Korang says. “The entire transplant team loves him, and he brings joy to our faces when we see him.”
As for the Emergency Center team of physicians, nurses, paramedics, residents, pharmacists who sprang into action as Wilfre stepped through the door, they are overjoyed to see him running on the soccer field again.
“Wilfre is a kid that I will never forget,” Hirsch says. “He is truly an amazing individual who has overcome great obstacles, and I hope he continues to do amazing things in his future knowing he can overcome anything after what he experienced.”
Wilfre will soon have a cardiac catheterization and biopsy, and if he continues on his current trajectory, his heart is expected to last well into mid-adulthood.
“I am happy to be alive with a brand-new heart,” Wilfre says.