Michael was 10 months old when he first arrived at Children’s Hospital of Philadelphia (CHOP). Diagnosed before birth with an extremely rare and complex heart defect – double outlet right ventricle (DORV) with Taussig-Bing anomaly – Michael had already undergone multiple open-heart surgeries at a hospital near the family’s home in Virginia. He needed a transplant but wouldn’t survive the wait for a donor heart, which can take months. When Michael’s parents were told his only remaining option was to return home for hospice care, they knew they needed to find a hospital that would give their son another chance at survival.

“CHOP was the only hospital that would take him,” says Michael’s father, Richard. “We didn’t care how far it was from home – we were going to get him there.”

Michael and his mother were transported by air to CHOP, and Richard drove through the night to meet his family in Philadelphia. CHOP’s Cardiac Center experts knew that if Michael was going to be listed for transplant, he would need a ventricular assist device (VAD) – or mechanical heart pump – to keep him alive until a new heart could be found. 

The Advanced Cardiac Therapies for Heart Failure Patients (ACT-HF) Program at CHOP is dedicated to discovering new ways to use mechanical circulatory support for patients like Michael. Because Michael had too much valve leakage for a conventional approach to VAD placement, the ACT-HF team presented his parents with an innovative option – one that had never been performed at CHOP before.

A CHOP first

Michael’s parents met with Katsuhide Maeda, MD, PhD, Director of Mechanical Circulatory Support and ECMO, the Surgical Director of Cardiac Lymphatics, and the Surgical Director of the Heart and Lung Transplant Programs at CHOP, to discuss the possibility of performing a total artificial heart surgery supported by the Berlin Heart biventricular assist device (BiVAD).

This procedure – a first for CHOP – would involve removing both of Michael’s ventricles, leaving him with only the two top chambers (or atria) of his heart, which would continue to collect blood. Dr. Maeda would then replace the ventricles with mechanical heart pumps (VADs), one attached to each atrium. These pumps would take over the work of Michael’s ventricles – one sending blood to the lungs and the other pumping oxygenated blood to the rest of the body. At first, Michael was supported by CentriMag™ pumps, used temporarily for acute circulatory support. As Michael improved, the team transitioned him to the Berlin Heart EXCOR®. The BiVADs would completely replace the function of Michael’s natural heart, serving as a bridge to transplant. 

When presented with this option, “Our jaws dropped,” says Richard. 

“This was a highly complex procedure,” says Dr. Maeda. “But our team is committed to innovating new approaches – supported by the latest research and medical advancements – that give children like Michael a chance to heal and grow.”

Although risky, the procedure would give Michael his best chance at survival. Says Richard, “If there was any chance at all, we were going to take it.”

A risk worth taking

The procedure, which lasted all day, proved successful, and Michael was listed for a heart transplant in March 2024. In the meantime, he lived at CHOP without a heart, relying on the BiVADs to stay alive. 

During this time, he participated in intensive, interdisciplinary rehabilitation – a key element of CHOP’s Advanced Cardiac Therapies for Heart Failure Patients Program. For children with VADs like Michael, intensive physical, occupational and speech therapies support normal development and help ensure they are as healthy as possible for transplant. 

The family ultimately remained at CHOP for nine months, even celebrating Michael’s first birthday in the Cardiac Center’s Cardiac Care Unit (CCU). “The CCU nurses and Child Life specialists helped us make the best of it,” says Richard, remembering Michael’s adoration of his nursing team. “We were able to give him a cupcake and take him for a ride in a special stroller.”

In Dec. 2024, on the same day Santa Claus visited CHOP, the family learned Michael was receiving a very special holiday gift: his new heart. 

Back home and thriving

Although the road to recovery after transplant proved difficult, Michael continued to show the incredible resilience that had already helped him survive six open-heart surgeries. “Michael is tough, and he pulled through,” says Richard. “Eventually, he started to get back to himself.”

Now home with his family, Michael is “unstoppable.” He continues to make developmental progress – crawling and pulling up to stand on his own – and he loves swinging on his backyard swing set and feeding the geese in the park with his dad. 

 “CHOP took a risk on us,” says Richard. “And it paid off.”