Children with end-stage heart failure now have more options than ever before. When they have no other medical or surgical options to treat their heart failure, they may be evaluated for a ventricular assist device, or VAD, that can help support their hearts until heart transplant.
As recently as 15 years ago, these devices were a rarity in pediatric hospitals — and they surely weren’t portable for use outside of the hospital setting! But thanks to new technologies that make living life at home and at school possible for children with VADs, an entire new field of care management is emerging. The newer VADs are mechanical heart pumps implanted inside the body that are electrically powered, either by batteries or being plugged into the wall.
Beth Hawkins, NP, became the Heart Center’s first VAD Program Coordinator in 2014, and her work in this role has improved the quality of life for patients by leaps and bounds. This fall, Hawkins will co-chair with Christina VanderPluym, MD, the medical director of the VAD Program, the Heart Center’s first ever Pediatric Ventricular Assist Device Conference.
The aims of the conference are:
- To explain the technical and clinical aspects of VAD management
- To recognize and troubleshoot commonly encountered VAD-related problems in both the inpatient and outpatient setting
The event is intended for any healthcare professional who has assumed a role on a multi-disciplinary VAD team, cares for patients supported by VAD technology, or simply wants to boost their functional knowledge on VAD problem solving.
VADs beyond the hospital setting
Children with VADs can return to school, participate in activities, and even play recreational sports in certain circumstances. Therefore, pediatricians, school nurses, caregivers and community members should be educated on how the devices work and how to provide support or emergency assistance when necessary.
“Returning a child home to their community truly takes a village,” says Hawkins. Not only do direct caregivers need to be trained, but local fire/dispatch/EMS/pediatrician/local cardiologist/school nurse and school administration should have working knowledge of the device and know how to respond in case of an emergency.”
That training is typically provided via either online tutorials and teleconferencing, but sometimes Hawkins will travel to the local community to provide hands-on training.
When she visits a school, Hawkins teaches the patient’s classmates about the device at an age-appropriate level. “It’s is important that their classmates understand why they need to wear a controller with batteries attached to it all the time,” she explains.
“Even though their hearts were in trouble and needed help from the pump, they can still play and participate in just about every typical childhood activity,” she says, adding, “The only thing they can’t do is swim.”
Patients and caregivers communicate with Hawkins and the VAD team every day, typically via text or email, to report on vital signs, how the pump is functioning and whether any alarms have occurred.
Pediatricians can be the first line of care if the VAD team has concerns and a patient requires evaluation. The VAD team relies on pediatricians to help assess these patients who are at high risk for complications such as bleeding, clotting events or driveline infections.
“Without the help of VAD trained pediatricians, these patients would have more adverse events and readmissions to the hospital,” says Hawkins.
To learn more about VADs and how you can better serve this growing patient population, register for the Pediatric Ventricular Assist Device Conference, to be held October 20th and 21st at the Hilton in Boston’s Back Bay.