Building an outpatient pediatric VAD program

Several years ago, the team at The Heart Center at Children’s Health℠, Children’s Medical Center Dallas came to a key realization about children with ventricular assist devices (VADs): Those children might achieve better outcomes if they were given more time on VADs — and were potentially sent home with the devices — instead of being moved to transplant as quickly as possible. That insight spurred David Sutcliffe, M.D., and his colleagues to develop the only outpatient pediatric VAD program in North Texas.

Building on the experience of other centers, the team developed eligibility criteria, designed a comprehensive process for educating children, families and their communities about living with VADs outside the hospital, and instituted a robust monitoring and follow-up system. Today, approximately 60% of discharge-eligible Children’s Health patients go home with a VAD, giving them an opportunity to become stronger and better prepared for the long medical journey ahead.

“If a child can return home and get back to a normal routine, they’ll usually end up healthier than if they’re confined to the hospital — and that puts them in position for a faster recovery and better outcome after transplant,” says Dr. Sutcliffe, Medical Director of Pediatric Advanced Cardiac Care at The Heart Center at Children’s Health and Assistant Professor at UT Southwestern.  

Giving Patients a Chance to Rehabilitate

The Children’s Health VAD program offers seven different devices including the HeartMate 3 and has some of the nation’s highest volumes of device support in children. The team’s experience with many different types of patients provided further impetus for creating an outpatient option.

“We’ve had a lot of high-risk kids who get a VAD, go into the ICU and then go straight to transplant, and their recovery can be a little rocky because they didn’t have a chance to rehabilitate,” says Ryan Davies, M.D., Surgical Director of Pediatric Advanced Cardiac Care, Pediatric Cardiothoracic Surgeon at Children’s Health and Associate Professor at UT Southwestern.

At other centers, Dr. Davies and his colleagues also saw kids who weren’t eligible for transplant — such as certain children with muscular dystrophy — go home with VADs and have happy, relatively normal lives for years on end.

“That made us realize that patients can do really well with VADs at home, and that it might be wise to allow some patients to step back and live with their VAD for longer than we would have traditionally considered,” Dr. Davies says.

Training Families to Go Home With VADs

A key first step in building the outpatient program was defining the eligibility criteria. Patients must have a VAD that’s fully contained within their chest. They must be clinically stable, with healthy kidney function and no clotting issues. All families who meet these criteria are considered for the outpatient program, and families who want to go home enter a rigorous education program to prepare them for life outside the hospital. Led by Jodie Lantz, MSN, APRN, PCNS-BC and Sara Mullowney, BSN, RN, the program includes more than 40 hours of instruction for primary caregivers and 20 hours of instruction for secondary caregivers.

“We teach them everything from how to prevent infection at the site where the driveline exits the skin, to how to perform CPR if the pump malfunctions,” Sara says.

Before being cleared to go home, patients and families have to pass a written test, manage their VAD for 24 hours in the hospital with little or no help, and take two small excursions with a nurse in tow — typically a walk outside the hospital for lunch, and a longer outing that often includes a movie.

“The whole process can be really stressful for parents, and that’s completely understandable,” Jodie says. “Part of my job is to help families find a healthy respect for the situation they’re in, so they understand the challenges but aren’t paralyzed with fear.”

Jodie and Sara also train members of the patient’s community — including school nurses, peers and local first responders — on what they need to know and do.

“We go as far as communicating with the electric company so that, if there’s an outage, restoring power to this patient’s house has to a be a priority because their life depends on charging their batteries,” Jodie says.

Goal: Improve Pediatric Heart Transplant Outcomes

Of 18 patients with discharge-eligible devices over the last three years, seven have been able to leave the hospital. While we’ve sent children as young as 6 years-old home with their VAD, most outpatients are adolescents. Once home, they gradually resume normal activities, including things like dance classes and playing basketball.

“Every family has been very, very grateful — it’s so empowering for them to go from being hospitalized with severe heart failure to getting back to a high quality of life,” Dr. Sutcliffe says. “Some patients are so happy living with their VADs that they’re reluctant to undergo transplant.”

No studies have examined outcomes for pediatric patients who undergo transplants after living at home with a VAD. But our team has noticed that, anecdotally, these patients typically have shorter lengths of stay and faster recoveries following transplant.

“It’s great to see those patients bounce back quickly, but that’s only one part of why we consider the outpatient program a success,” Dr. Sutcliffe says. “When a kid with a VAD sends you pictures from their prom, it’s incredibly gratifying because you realize that they’re not just back home — they’re back to a happy life.”

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