When baby John entered the world in March 2025, his tiny heart was already an open book. After a routine 15-week prenatal anatomy ultrasound revealed that John had heart function irregularities, his family was immediately referred to Nicklaus Children’s Hospital Heart Institute, where further prenatal evaluation led to an innovative plan of care.
John was diagnosed in utero with a congenital heart defect called double outlet right ventricle (DORV) in which both the aorta and pulmonary artery emerge from the right ventricle. This anomaly causes oxygen-poor blood to mix with oxygen-rich blood, and can lead to severe symptoms, including breathing issues, heart failure and poor growth. In addition, John had pulmonary valve atresia, a rare defect in which the pulmonary valve fails to form properly, blocking blood blow from the right ventricle to the lungs.
Typically, such conditions require multiple open-heart surgeries over a lifetime. Thanks to the clinical leadership of Dr. David Kalfa, Chief of Cardiovascular Surgery, John was offered the REV (réparation à l’étage ventriculaire) procedure. This method, available at only a few top-tier pediatric heart programs nationwide, is superior to prevailing methods as it corrects the blood flow of the heart without using artificial conduits. The conduits used in conventional methods become obstructed over time, requiring surgical replacement. Thus, the REV procedure offers a future with less surgical interruption and family stress.
“When we met Dr. Kalfa, we were struck by his passion and confidence,” recalls John’s mother Janeth. “He didn’t just explain the surgery, he walked us through it step by step. That’s when we learned about the REV procedure, a method no other surgeon had mentioned. We felt a sense of peace knowing that someone truly understood our son’s heart and was ready to fight for it.”
After a brief stay in the Cardiac Intensive Care Unit at Nicklaus Children’s, John was sent home with an oxygen tank so he could get bigger and stronger prior to his surgery. Janeth recalls that while he ate well and could sit up on schedule, he was a bit delayed with crawling or reaching, conserving energy due to his heart condition.
At nine months, John was ready for surgery. “I had just spent nine months doing everything in my power to protect John and keep him safe and healthy,” recalls Janeth. “Now I had to put him in the hands of others. It was incredibly hard.”
But as soon as she saw her baby after the surgery, she knew her confidence in Dr. Kalfa and the team at Nicklaus Children’s Hospital was well placed.
“I remember seeing how pink his lips were and seeing his oxygen levels at 99 percent. I saw my baby, alive, strong, fighting. That moment brought a peace I can’t fully put into words and a gratitude that will live in my heart forever.”
At 14 months, John is a busy boy. He is crawling at high speeds through the house, working to master walking and reaching for everything. He no longer needs an oxygen tank and isn’t taking any medications.
“John is our gift from God,” said Janeth. “He is the happiest little boy and truly such a light. He smiles at everyone he meets, radiates joy and has a presence that fills a room without even trying. We are so grateful to Nicklaus Children’s and Dr. Kalfa. They gave us hope when we were surrounded by uncertainty, strength when we felt weak and the priceless gift of watching our child grow, smile and live a full life.”
