Stanford Medicine Newsletter Updates For the Local Community

 

Implanted pump helps heart-failure patient graduate from high school

Tovi “TJ” Balliao uses a portable device that is allowing his doctors to delay the need for a heart transplant

   

In February, Tovi “TJ” Balliao and his family received devastating news: The 17-year-old was suddenly in heart failure, experiencing life-threatening bouts of irregular heart rhythm.

“He seemed normal, laughing with his siblings, but doctors told us, ‘He’s like a switch. At any time he can turn off,’” said TJ’s father, Marlon. “We were so overwhelmed,” said his mother, Divina.

The diagnosis, severe dilated cardiomyopathy, often strikes without warning or any apparent trigger. TJ needed a new heart but was too sick to wait for a heart transplant. 

“The wait time for a transplant was much longer than we could expect TJ to be stable,” said David Rosenthal, MD, a cardiologist at Lucile Packard Children’s Hospital Stanford and Stanford Children’s Health.

So TJ received a ventricular assist device (VAD), a pump surgically implanted in his heart to help it move blood through his body. At first, the Balliao family thought the pump would keep TJ alive until a donor heart became available. But the device enabled him to recover so strongly that doctors gave him an unusual option: He could go home with his VAD and delay a transplant indefinitely.

Extending life span

For TJ, a high school senior, this meant a precious opportunity to graduate with his class. For his doctors, it extended the vanguard of treatment for children with heart failure. Although some adult heart-failure patients now live with VADs for months or years, children who get the pump usually receive a transplant as soon as possible. Rosenthal thinks TJ’s case could represent a change in thinking.

“It’s possible that using a VAD to intentionally delay a heart transplant could add to the patient’s total lifespan,” said Rosenthal, who directs the hospital’s pediatric heart failure and transplantation program and is a professor of pediatrics at the School of Medicine. “Survival after transplant is not as long as the natural lifespan, especially for children.”

The VAD program at Lucile Packard Children’s Hospital Stanford is the largest in the country, with a number of different mechanical support devices in use. These devices help patients maintain strength while waiting for a new heart; otherwise, heart failure weakens the body, making recovery from eventual transplant more difficult. When a child is stabilized by use of a VAD, the medical team also can be more selective about choosing the best-matched donor heart. “There is some likelihood that a small proportion of patients’ hearts will be able to recover, and those children will avoid transplant completely,” Rosenthal said.

Device improvements

Rosenthal’s forward-thinking approach continues a long tradition of leadership in VADs from his team at the hospital’s Heart Center. In 2004, the Stanford Children’s Health team was the first in the western United States to use a VAD to help a child survive to transplant by pioneering a device called the Berlin Heart to help an infant live through a 55-day wait for a new heart.

The Berlin Heart was large and cumbersome, requiring children to live in the hospital. In contrast, TJ has a portable device called a Heartware HVAD, with a messenger-bag-style battery pack that he wears when he’s not near an electrical outlet.

“It’s cool: It tells me when it needs me,” TJ said. “It beeps to remind me to change the battery every six to eight hours.” He numbered the machine’s four batteries to ensure that he’s always charging and using them in a strict rotation, one of many tips he received from Jenna Murray, RN, the hospital’s VAD coordinator.

“He’s very organized; he did that himself,” said TJ’s mom. “He also knows all his medications, and he’s the one who fills up his pill box. He’s pretty responsible.”

Although life with the VAD comes with restrictions—no swimming, for instance—it’s a huge improvement on the early days of TJ’s illness, when his failing heart confined him to the hospital.

“I feel a lot better,” he said. “I can walk better, and that feels great.”

Future options

“TJ is pretty adaptable,” said Rosenthal, glad to be able to offer his patient the opportunity to finish high school on time, when the medical team and the Balliao family will assess the next steps.

TJ has been accepted to San Jose State University to study civil engineering, so he may be sitting in introductory engineering classes next fall with his trusty Heartware battery pack at his side. Perhaps he’ll receive a newer VAD with an internal power source to free him from his 24-hour tether to a battery or wall outlet. Such devices, Rosenthal said, are not far off.“I like the idea of keeping that kind of option open for him,” Rosenthal said. “Our team is grateful to be on the forefront of expanding choices for kids with heart failure.

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