Jayden's Heart Transplant Journey

Jewel and Jayden share a happy-go-lucky nature that seems at odds with all that they’ve been through. By the time he was 3 years old, Jayden had undergone 3 surgeries to correct hypoplastic left heart syndrome, a serious congenital heart defect.

James Gangemi, MD, a pediatric heart surgeon who specializes in congenital heart disease, shares,"Hypoplastic left heart syndrome is a congenital heart defect where babies are born without a significant development of the left-sided structures of the heart. And so, therefore, we're required to do a palliative procedure called a Norwood procedure."

The Norwood procedure is considered one of the biggest surgeries that congenital heart surgeons are asked to perform, and it's usually done within the first week of life. For Jayden, the Norwood procedure was done when he was only 2 days old.

For Hypoplastic Left Heart Syndrome, the Norwood is the first of 3 surgeries. The next is performed when a baby is just a few months old. And the final, the Fontan, is performed when they're around 3. Jayden made it through all 3 surgeries.

It seemed like they’d made it through the rough patch and were looking at brighter days. Then, at 7 years old, Jayden got sick.

A New Heart

In May 2024, an illness left Jayden struggling to breathe. He was rushed to a hospital near his home in Richmond, where his oxygen levels (which should hover between 96-100) had plummeted to the 60s. The hospital transferred Jayden to UVA Health Children’s.

The pediatric cardiology team tried to recover Jayden’s heart, but the damage was too severe. Instead, Jewel and Jayden were given the news. Jayden needed a new heart.

Jayden was equipped with a ventricular assistive device, which helps patients survive while waiting for a transplant. Fortunately, he didn’t have to wait very long for a donated heart. But that was just the beginning of Jayden’s journey.

Recovery

Recovering from a heart transplant can be challenging.

Jayden and his mom stayed in the hospital for months. Physical therapy and occupational therapy specialists helped him relearn how to walk. Through his recovery, his cardiology team stayed with him, checking numbers daily and making sure his family was informed and involved in his care.

Jewel shares, “They gave me information that I needed to know every day. They were checking blood levels every day. It's a lot they were doing, and I'm just pleased and happy over the outcome.”

Jayden still visits the pediatric heart team when he comes back for follow-up appointments. Our providers, who Jayden and his mom consider friends, are always thrilled to see him thriving.

A Miracle Child

Today, Jayden is a happy-go-lucky 8-year-old who enjoys playing Minecraft, talking about cars, and watching SpongeBob SquarePants. He runs and plays with his 2 sisters and 3 brothers. And he can make you laugh, his mom shares. A joke-teller with a winning smile, it’s hard to process all that he’s been through.

But Jewel never loses sight of it.

With 6 kids, 1 of whom was just a baby during this time, her multitasking skills are unparalleled. Through it all, she stayed strong and unwavering in her belief that Jaden was meant to be here.

But there’s another family she’s thankful for.

For families dealing with an unexpected loss, the decision to donate organs isn’t an easy one. Jewel shares, “I want to thank the family for just even donating. It's just ... I can't even explain it. I'm almost ready to cry. But we are very thankful. I'm very thankful for the family. And for people who don't choose to donate, please donate. It saves lives.”