According to Cleveland Clinic Children's, John-Henry was born with hypoplastic left heart syndrome, or HLHS, a rare congenital condition. HLHS occurs when the left side of the heart doesn't form as expected during pregnancy, and the condition impacts blood flow through the heart, according to the Centers for Disease Control and Prevention . This leads to the right side of the heart having to pump blood to the lungs and the rest of the body, causing the right side of the heart to become overworked.
Cleveland Clinic - PHOTO: John-Henry was born with hypoplastic left heart syndrome or HLHS, a rare congenital condition that impacts blood flow through the heart.
According to the hospital, John-Henry needed multiple surgeries to treat his condition, but after he started to experience heart failure, doctors determined a heart transplant was his only option. The boy was placed on the transplant waiting list in December 2023, and in May 2024, he and his family learned they had a match.
John-Henry underwent heart transplant surgery the day after he shared the happy match news with his friends. The surgery was performed by a team led by pediatric and congenital heart surgeon Dr. Hani Najm.
After transplant surgery, John-Henry was then discharged in July to Cleveland Clinic Children's Hospital for Rehabilitation. He was discharged to go home on Aug. 23 to continue his recovery journey.
Sarah Lee said she wanted to share her son's story to raise more awareness about organ donation.
"Organ donation saved my son's life. Without it, he wouldn't be living right now. We're going to take great care of this special heart, and we're forever grateful to our donor and their family," Lee said.
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