Cleveland, United States - May 20, 2024

In a story that has captured the hearts of many, 6-year-old John-Henry Lee has undergone a life-saving heart transplant, marking a new chapter in his battle against hypoplastic left heart syndrome (HLHS), a rare congenital heart defect. The news came after a six-month wait, a period filled with hope and anxiety for John-Henry and his family.

John-Henry, diagnosed with HLHS before birth, faced immediate medical challenges. His mother, Sarah Lee, recalls the emotional rollercoaster, especially the moment she learned a new heart was available. "When the transplant coordinator said they found his special heart, I immediately broke down," Sarah shared. The young boy, aware of his condition, was excited to share the news, telling every caregiver he met, "I'm getting a new heart!"

From the moment he was born, John-Henry's life has been intertwined with medical interventions. His first open-heart surgery, the Norwood procedure, was performed when he was just five days old. This was followed by the Glenn procedure at four months, and later, the Fontan procedure. Despite these surgeries, his heart continued to weaken, leading to heart failure and the necessity for a transplant.

Dr. Gerard Boyle, a pediatric cardiologist at Cleveland Clinic Children’s, explained the complexity of John-Henry's condition. "After the Fontan procedure, some patients can survive into adulthood, but for John-Henry, his right ventricle couldn't cope, and his health deteriorated rapidly," Dr. Boyle said.

The transplant, performed in May 2024 by Dr. Hani Najm, was a critical success, but recovery has been challenging. John-Henry faced issues like gastroparesis and transplant rejection, common but serious complications. However, with intensive care and rehabilitation at Cleveland Clinic Children's Hospital, he has shown remarkable improvement.

Sarah describes the transformation, "Before rehab, John-Henry could barely move. Now, he's running around, playing, being a kid again." His recovery has been supported by a dedicated team of healthcare professionals, whose efforts have not gone unnoticed by the family.

"John-Henry's resilience and love for life are truly inspiring," Dr. Boyle remarked. "His story is a testament to the impact of organ donation."

The Lee family is now advocating for organ donation, recognizing the profound impact it has had on their lives. "Organ donation saved my son’s life. We’re forever grateful to our donor and their family," Sarah expressed, highlighting the life-saving potential of such acts.

As John-Henry continues his recovery, his story serves as a beacon of hope, not only for those awaiting transplants but also for the medical community and families facing similar challenges. His journey underscores the importance of medical advancements and the critical role of organ donation in giving a second chance at life.