It was 5 a.m. on the Monday after Thanksgiving, and 5-year-old Tyler and his mom, Danielle, were getting ready to leave for his monthly appointment at Children’s Hospital of Philadelphia (CHOP).

“I’ll see you after I get my new heart,” Tyler told his grandparents as he said goodbye.

“I said, ‘No, buddy, you’re not getting your new heart today,’” Danielle remembers.

But 40 minutes later, Tyler’s cardiologist, Joseph Rossano, MD, called with some incredible news: They had identified a potential donor heart for Tyler.

“This looks like a good heart for Tyler,” he said. “Come in with him as soon as you can.”

“I was really excited — and really nervous,” says Danielle. “We’d been waiting so long — and I knew there were more hoops to jump through before it was definitive.”

A frightening diagnosis

Danielle and her husband, Joe, first realized that something was wrong with Tyler in March 2016, a few years after he had his third open-heart surgery to treat hypoplastic left heart syndrome (HLHS), a complex congenital heart defect. “He would cry all night,” says Danielle. “He would say, ‘I'm sick.  I'm sick.’"

More About HLHS

After examining Tyler and performing a series of tests, the team at the Cardiac Center at CHOP delivered some devastating news: Tyler was experiencing heart failure. They changed his medications, but he got sicker and sicker. Tyler’s medical team determined that medication or conventional cardiac surgery would not be enough to restore him to health — he would need a heart transplant.

That May, Tyler was listed for a transplant, and his doctors faced a new challenge: keeping him alive until a heart became available.

A treatment breakthrough

Children can spend weeks, even months, waiting for a new heart — and until recently, they had to remain in the hospital the entire time. Today, however, some children receive a ventricular assist device (VAD), a mechanical pump that is implanted in the heart. The device circulates blood throughout the body when the patient’s heart is too weak to do it alone.

The Cardiac Center team helped pioneer the use of VADs in children: 60 children have received a VAD at Children’s Hospital. The team thought Tyler was a good candidate for a VAD called the HeartWare® device. But it took some creative thinking to make it work.

“Most VADs are not designed for children or for individuals with complex circulations,” says Dr. Rossano. “They’re designed for adults with structurally normal hearts — and when we try to use these technologies for small children and for children with complex forms of congenital heart disease, it can be challenging. We've been able to do it successfully because of some very innovative strategies and techniques that our surgical team has developed.”

At the time of Tyler’s VAD surgery in June 2016, he was the smallest child to receive the HeartWare® device, and his case was particularly challenging.

After carefully analyzing the structure of Tyler’s heart using sophisticated surgical modeling techniques, cardiothoracic surgeon Christopher Mascio, MD, devised an approach that was uniquely suited to Tyler’s anatomy. He removed one of Tyler’s heart valves and placed the VAD in his right atrium. VADs are typically implanted in one of the ventricles of the heart, but Tyler’s team decided to take a different approach because he had only one functioning ventricle. The procedure was a breakthrough — and Tyler went home with his family to wait for his new heart.

“I was surprised at how quickly he went back to being himself,” says Danielle.