Living a full life on a VAD

The youngest of five kids in the Bingham family, 8-year-old Gage is the third of his siblings to suffer from a life-threatening heart failure condition known as dilated cardiomyopathy. Gage is awaiting transplant, but you’d never know it to see him running around the playground at school. In November 2015, surgeons at Lucile Packard Children’s Hospital Stanford placed an internal pump called the HeartWare ventricular assist device, or HVAD, in Gage’s small chest. In fact, Gage is one of the smallest children to be fitted with the HVAD, which is normally used for adults.

One of Gage’s sisters, Lindsey, now 12, survived a remarkable 230 days until transplant with an external heart pump called the Berlin Heart, which required her to be in the hospital until a donor heart became available. But Gage was discharged from the hospital over a year ago to the care of his parents, both of whom were trained and certified to use the HVAD before leaving the hospital. Gage’s mother, Stacy, is also a registered nurse.

Cardiac surgeons at Lucile Packard Children’s Hospital Stanford continue to make progress on fitting the HVAD into smaller and smaller patients. Being out of the hospital while awaiting transplant allows kids to stay active, keep up with school and social experiences, and enjoy the comforts of being with family, though most are required to live nearby the hospital. The health benefits are also clear: “Patients who’ve been supported on HVADs while they’re waiting for transplants typically are really good transplant candidates,” says David Rosenthal, MD, Director of the Pediatric Heart Failure and Transplantation service at Lucile Packard Children’s Hospital Stanford. “They are in good condition for transplant, and get through the transplant surgery more smoothly than patients who’ve been stuck in the hospital, who are deconditioned and not as well-nourished.”

The HVAD is powered by an external battery pack that patients carry in an over-the-shoulder bag. But for young, active kids, that side-pack isn’t ideal. So, Christina Litzner, RN, a nurse in the cardiovascular intensive care unit at Lucile Packard Children’s Hospital, customized a backpack to carry the HVAD battery. “It’s been a labor of love,” says Dr. Rosenthal, “and a big contribution to reducing the bulk and weight of the backpack, which doesn’t seem like a big deal but for someone of Gage’s size it makes a big difference in his mobility.”

“He’s still the youngest, smallest kid on the VAD right now,” she says. “Most of the other kids are teenagers, so he’s seen them come in, get their transplants, and go.” Though it can take longer for a donor heart to become available for a child, the HVAD offers the advantage of keeping kids healthy enough to wait for a heart that’s the perfect match, not just the first available.

“With these rapid advances, we’re able to discuss each patient with referring physicians, to consider the issues and changing technology, and select a bridge to transplant that best suits the patient,” says Rosenthal. “Our Heart Center has the experience, confidence, and knowledge to push out a little further on the next case, and the case after that, for the best possible outcomes.”