New Heart, New Chance for Young Man with Becker Muscular Dystrophy

Stanford heart team seeks creative ways to save lives by accepting hepatitis C donors

Heart specialists at Stanford Medicine Children’s Health’s acted boldly to care for Serafin, and today he’s making the most of his new chance at life.

“Right now I’m teaching myself how to draw, and I’m reading new books,” says the 19-year-old from Sacramento. “I try to push myself to learn new things.”

Serafin didn’t have any health concerns as a young child until age 10, when he started experiencing muscle spasms. His local doctors assumed he was having common growing pains. But the muscle pain didn’t get better, it got worse. At age 12, he was diagnosed with Becker muscular dystrophy—a genetic disease that causes muscle weakness throughout the body, including the heart.

“When I played with other kids, I couldn’t keep up with them, and eventually I had to stop running,” he says. “Getting the diagnosis of muscular dystrophy at that age was hard on me.”

Over the next five years, the disease progressed until eventually Serafin needed a cane to walk. Tests showed that his heart function was also declining. “I started experiencing all-day fatigue, stomach pains, and shortness of breath. I didn’t know it was heart failure,” he says.

Because Serafin’s heart problems were complex, doctors at his local hospital advised him to go to Stanford Medicine Children’s Health.

“Historically, hospitals have been hesitant to consider kids with Becker muscular dystrophy as candidates for heart transplant. At Stanford Medicine Children’s Health, we believe that transplantation can prolong these kids’ life spans and improve their quality of life,” says Seth Hollander, MD, medical director of heart transplantation.

Because Serafin was in advanced heart failure, something had to be done fairly quickly. The heart specialists at Stanford Medicine Children’s Health recommended a ventricular assist device (VAD)—an artificial heart pump. They also recommended that Serafin consider going on the waitlist for a heart transplant.

VAD: A mechanical heart pump

VADs help patients feel better so they can reengage in daily life. Michael Ma, MD, pediatric heart surgeon at Betty Irene Moore Children’s Heart Center, placed a left ventricular assist device (LVAD) in October 2020, and after a recovery period, Serafin felt better. He had more energy, and most of his heart failure symptoms went away.

“The LVAD supported him very well and allowed him to gain strength and return home,” Dr. Hollander says.

VADs traditionally serve as a bridge to heart transplant, but they can also be used as “destination therapy,” meaning they can offer a permanent solution. Yet VADs are not a cure, and when used long term, they require a lot of care. For example, the heart pump is connected by lead wires to a controller box that is worn outside of the body.

“I planned to live with the VAD, but then I decided that carrying around that much weight was too much for me with my muscular dystrophy,” Serafin explains.

Deciding to move forward with a heart transplant wasn’t easy for Serafin and his family. They took their time, grateful that Stanford Medicine Children’s Health was able to give them the option of a heart transplant.

“The doctors really helped me make that hard decision, one I didn’t expect to be making at my age. They left it up to me, but they were there to support me and answer all of our questions,” he says.

“Serafin was a very sophisticated patient; he was well educated on his disease and prognosis,” says Elisabeth Martin, MD, cardiovascular surgeon.

New hepatitis C donor heart program

Before patients can have a transplant, they must wait for a donor organ that matches with their profile and needs. Sometimes the wait becomes long, and while they wait, their health deteriorates. Some children, sadly, die while waiting.

The Betty Irene Moore Children’s Heart Center at Stanford Medicine Children’s Health is pushing forward innovative solutions to shorten heart transplant wait times for children and young adults. One of these revolutions is using hearts from donors who are infected with hepatitis C, a serious liver infection. While this sounds risky, it’s not. That’s because a reliable cure, a pill taken once a day for a few months, is now available for hepatitis C. These antiviral drugs offer a 90% to 100% cure in just 12 weeks’ time, according to the U.S. Food and Drug Administration.

“The statistic that 13% of children die while awaiting heart transplant motivates us to accept every appropriate heart, including those from donors with hepatitis C. For us, one child dying while on the waitlist is too many,” Dr. Hollander says.

Accepting donor hearts from people infected with hepatitis C is becoming increasingly common for adults, but in pediatric programs it is still quite rare. Stanford Medicine Children’s Health is one of a handful of children’s hospitals across the country that do so.

“Because our heart transplant program is so large, and the children we care for are extremely high risk, we do not want to pass up any donor heart that comes available,” Dr. Hollander adds.

The Pediatric Advanced Cardiac Therapies (PACT) program, Stanford Medicine Children’s Health’s heart failure and heart transplant program, achieves exceptional outcomes, despite accepting children who have advanced, complicated heart failure. Thanks to innovations like the hepatitis C program, children and young adults like Serafin who need a heart are able to get one—often faster—and a heart is freed up for the next child down the list.

“Part of it is having the bravery to do it, because you know your patient will get hepatitis C. We start treatment as soon as possible and before any symptoms set in,” Dr. Hollander says.

A successful heart transplant

Serafin waited four months for the call that a donor heart was available. He remembers where he was and the exact time the call came. “When I heard the news, I was shocked, scared, and excited all at the same time,” he says.

Dr. Martin performed Serafin’s heart transplant almost exactly a year to the day of his VAD surgery—on October 22, 2021. The open-heart surgery went without a hitch, and his recovery went smoothly.

“Because of the VAD and the support it gave his body, Serafin came into the heart transplantation surgery strong. He was a star after the transplant and recovered well,” Dr. Martin says.

The PACT program at Betty Irene Moore Children’s Heart Center has a track record of providing successful heart transplants to patients with muscular diseases, like muscular dystrophy. Caring for children with muscular dystrophy takes a special awareness and knowledge of how the transplant process challenges muscles, including those that allow the lungs to function. Doctors, nurses, respiratory specialists, and the rehabilitation team provide attentive, nuanced care to ensure that a patient’s breathing is restored as fully and quickly as possible.

“The PACT program takes on patients who have uncommon underlying conditions, like muscular dystrophy, that put them at a higher risk,” Dr. Martin says. “While some places might turn them away, we believe that patients like Serafin deserve the same chance as anyone else.”

Once Serafin is fully healed, he plans to pick up where he left off before his heart failure became serious—starting college. He has a newfound career goal, inspired by the care he received: becoming a child life specialist. The Child Life and Creative Arts Department at Stanford Medicine Children’s Health supports patients and families through therapeutic experiences that minimize stress and promote well-being.

“The child life specialists came to my room with art and music activities, which helped take my mind off of surgery. They even taught me how to play the piano,” Serafin says. “Child life really interests me as a career, because I have insight into being a patient in a hospital, and I could help others.”

The entire team is extremely happy that Serafin has a new heart and a new chance at life. They know he will achieve whatever he sets out to do.

“Serafin is the most optimistic, brave, and decent person you will ever meet,” Dr. Hollander says. “There’s no single hero to this story. It’s our whole team, along with Serafin and his family, that made for his great outcome.”

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