Ten-year-old Jacque Fair is one of the first children in the St. Louis area to receive an implantable heart device commonly used in adults.
“The internal ventricular assist device has been used in adults for years,” explains Mary Mehegan, RN, VAD coordinator for St. Louis Children’s Hospital, “but it’s only recently become an option for smaller patients due to Heartware’s smaller technology.”
Jacque, who was diagnosed this summer with myocarditis and cardiomyopathy, became the hospital’s fourth patient to receive a Heartware device since it began using the technology in 2012. Jacque will likely require a heart transplant. First, her organs need a chance to recover from several months of deterioration. Her problems began over the summer, when she started having trouble breathing. She assumed it was asthma. “I have a history of asthma,” she says. “I was back and forth from the emergency room for weeks.” X-rays at her hometown hospital revealed an enlarged heart, so doctors referred her to the children’s hospital in Kansas City. Further medical evaluation revealed the complexity of Jacque’s needs, so the team transferred her to St. Louis Children’s Hospital, where the medical team led by Dr. Charlie Canter, determined her heart failure had progressed to the extent she’d need an assist device to bridge her to a heart transplant.
“Application of this technology in children may eventually allow physicians to ‘defer’ a decision on transplantation and give a child’s native heart a better chance for recovery,” says Dr. Canter, director of the heart transplant program at St. Louis Children’s Hospital and the Lois B. Tuttle and Jeanne B. Hauck Professor of Pediatrics at Washington University School of Medicine. “It also allows patients with end-stage heart failure who are not heart transplant candidates to have effective therapy.”
Relatively new to the pediatric population, it is believed fewer than ten children’s hospitals in the nation have used implantable ventricular assist devices.
“This is the forefront for care of children with heart failure resistant to medical management,” explains Dr.Umar Boston, pediatric cardiothoracic surgeon, who implanted Jacque’s Heartware. “We don’t have an ideal device for kids right now, but we’re learning how to adapt this adult device successfully in adolescent sized children.”
Heartware is a disk-like device sewn into the heart’s left ventricle that pumps blood when the heart is too weak to do so on its own. It is connected by a lead through the abdominal wall (drive-line) to a controller and battery pack that fit into a small handbag and weigh less than 4 pounds, making it possible for a child to be discharged from the hospital and return to normal activity while awaiting transplant. Teenagers and children as small as 65 pounds can now be candidates for the internal pump. “We discharged a child on the device late last year and that child has actually returned to school,” says Mehegan.
“That’s a really big deal.” Small children and infants don’t have the space in their small chest cavities to accommodate most implantable technology currently available to adults. Smaller kids would still use a Berlin heart, an external pumping device that was championed and FDA-approved – with help from St. Louis Children’s Hospital – for children of all sizes, including infants. Both internal and external pumps allow patients in heart failure to become more stable.
“They allow a patient to build strength and rehabilitate before having a transplant,” says Mehegan. It also buys them time to wait for donor organs. Jacque hopes to go home from the hospital with her Heartware pump in the next 1-2 weeks. “I’m not sure if I’ll be comfortable sending her back to school,” says Jacque’s mom, Katrina. “That will depend on how willing the school is to learn about managing the device.” But it will allow Jacque the opportunity to be home-schooled, play with her three siblings, and continue building back her strength as she awaits a heart transplant.
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