Surgeons transform boy’s life with donor heart transplant

By Ben Barry

Surgeons transplanted a donor heart into a young boy, transforming him from a frail patient into a lively kid.

When Sarah Lee was pregnant with John-Henry, now aged seven, she learned he had hypoplastic left heart syndrome (HLHS) - a rare congenital heart condition where one side of the heart doesn’t develop correctly.

John-Henry was five days old when he had his first open-heart surgery, and at four months old he underwent the Glenn procedure - a heart surgery performed on infants with single ventricle heart defects to improve blood flow to the lungs.

In December 2023, John-Henry was placed on the transplant list after he started experiencing heart failure.

In May 2024, they got the news that a new heart had become available for John-Henry, and the very next day, he underwent his heart transplant procedure.

Video shows surgeons doing the operation - and John-Henry celebrating afterwards with medical staff.

Now, one year later, seven-year-old John-Henry enjoys playing outside with his brothers, playfully battling with anyone who is up for the challenge and chasing his inflatable T-Rex.

Sarah, from Cleveland, Ohio, said: “When the transplant coordinator said they found his special heart, I immediately broke down.

“I walked into the room teary-eyed to tell John-Henry, and when I told him, he said, ‘I have to go tell everybody.’

“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.”

Before he was one year old, John-Henry underwent two major heart operations after he was diagnosed with HLHS.

In December 2023, John-Henry was placed on the transplant list. From there, he spent Christmas, his sixth birthday, New Year’s and Easter in the hospital waiting for a new heart.

Sarah said: “Every holiday was just another holiday we celebrated in the hospital. We basically moved into his hospital room.

"At a certain point, you start thinking it’s not going to come.”

In May 2024, they got the news - a new heart had become available for John-Henry.

The very next day, he underwent his heart transplant procedure performed by pediatric and congenital heart surgeon Hani Najm, MD, who had also performed all of John-Henry’s previous heart surgeries.

After his transplant, John-Henry started what would be a long recovery.

He experienced gastroparesis - paralysis of the stomach - which made it difficult to digest food.

This made eating for John-Henry challenging. He also experienced transplant rejection.

Gerard Boyle, MD, John-Henry's pediatric heart function and transplant cardiologist at Cleveland Clinic Children’s, said: “John-Henry started tolerating his feeds being delivered through a nasogastric tube and will work his way back to feeding on his own again.

“When it comes to rejection, it’s unfortunate but not unexpected.

"We ramp up our surveillance looking for signs of rejection, and he experienced it in the amount of time we would anticipate.

"We were ready and able to start treating it aggressively.”

Now, a year on from his transplant, John-Henry continues receiving follow-up care.

He also undergoes therapy at the Cleveland Clinic Children’s Hospital for Rehabilitation to improve his mobility, regain strength and enhance his overall quality of life.

Sarah said: “John-Henry continues to inspire me every day.

"His journey has not been an easy one, but each day he finds opportunities to laugh, play, and embrace life.

"There are so many people who have contributed to his remarkable progress, from his care team to his family, to his donor and their family, we are forever grateful for their support and the selfless, compassionate act of organ donation.”