Brittany Abercrombie, NP, and Alan Brock, M.D., discuss the progress of a patient in the Hearts at Home program.
As the reputation of the Children’s of Alabama Pediatric and Congenital Heart Center of Alabama has grown, so has the success of its programs. Case in point—Hearts at Home, an interstage home monitoring program for any patient with single ventricle physiology who has undergone their first palliation procedure. In the last five years, the program has seen steady growth in the number of these patients, and leaders say the center’s reputation is among the reasons why.
“I think as a heart center in general, we’ve just had an influx of patients,” said Brittney Abercrombie, a nurse practitioner and the coordinator of Hearts at Home. “And so by default, that means that we are having more interstage patients.”
When Abercrombie moved into her role five years ago, Hearts at Home was caring for six to eight patients at a time. Now, she says they typically have about 13. Yearly, the program follows as many as 30, compared with 23-25 when she began. In the last couple of years, they’ve attracted more patients from outside Alabama, including children from Georgia, Tennessee and the Pensacola, Florida, area. Some of the program’s patients chose Children’s over other options in the region.
“I think they recognize that our outcomes here are some of the best in the Southeast,” said Alan Brock, M.D., the program’s medical coordinator. “And when they have the opportunity to look around and pick which program they want, I think patients are choosing us.”
As a result of the program’s success, hypoplastic left heart syndrome—a condition that brings many patients to the program—has become one of the most common forms of single ventricle congenital heart disease the hospital treats, Brock added. “I think it’s because we’re getting better at what we do and we’re saving a lot more lives now,” he said. “That is part of the reason that there are more patients coming into our program.”
What is Hearts at Home?
Through the Hearts at Home program, the families of patients with hypoplastic left heart syndrome and other forms of single ventricle congenital heart disease have access to education and technology that helps them to monitor and track their child’s heart health at home during the period between their first and second stages of palliation—procedures designed to repair their congenital heart defect. This time is tenuous for the child and often stressful for the parents, requiring a great deal of medical management, including monitoring, medications, adhering to strict feeding regimens, checking vital signs and having emergency access to equipment. “I think especially for these first-time parents, they don’t know what’s normal and what’s not,” Abercrombie said. “They’re not only learning to parent, but they’re learning how to parent a medically fragile child, so I think that’s a big challenge for them.”
There’s also the threat of morbidity, which is what led to the creation of interstage monitoring programs. The effort began in 2008 with the formation of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). Since then, interstage monitoring programs across the country have succeeded tremendously, dropping the interstage mortality rate by more than 40%, Brock said.
The programs are effective because of their focus on education, data and communication. The work begins before a family even leaves the hospital. While there, they go through extensive training to help them understand their child’s condition, how to manage it and the warning signs that might arise. Once they’re home, they track all of their child’s vitals—specifically heart rate, oxygen and saturations—through an app called Locus Health. This data is accessible by the patient’s care team, giving them a look at the patient’s trends and helping them to quickly identify any problems. “It helps us see the whole picture while they’re at home,” Abercrombie said. If any issues do arise, the family can connect with the care team via messages through the app, and providers can even use the app for telehealth appointments, if necessary.
In one case at Children’s, monitoring may have saved a child’s life. Abercrombie says the team detected a change in heart rate and some feeding intolerance, which, combined with the patient’s trends, indicated they needed medical attention. The team called the mom, got the patient in for a visit and prevented a medication overdose. “If we didn’t have [the monitoring], there’s a good chance that could have ended up in a mortality,” Abercrombie said.
The team
The Hearts at Home team includes, in addition to Abercrombie and Brock, cardiologists who see most of the interstage patients, a nutritionist who specializes in cardiovascular disease, a social worker and speech therapists. Nurse practitioners or intensivists are available to answer parents’ questions 24 hours a day, which can be reassuring. “It is just a very small group of people that are caring for these patients day in and day out, along with the family,” Abercrombie said. “And so I think that they feel a lot of comfort and confidence in knowing that there’s someone there to talk with them and help them throughout the day.”
This frequent communication can lead to close relationships between the parents and the care team—so much that when the child eventually “graduates” from the program (after having their second palliation procedure) and no longer has the same level of access to the team, the achievement is often bittersweet.
“It’s a good thing,” Abercrombie explains to the parents. “It means your baby has a much more stable heart. You shouldn’t need us as much. They can do a lot more normal baby things.”
“But [the parents] do have a little bit of sadness about losing kind of that access,” she added.
When a new patient enters the program, the team contacts their pediatrician to share information about the patient’s condition and explain how the program works and what to expect. They also reach to local EMS in the patient’s community to inform them that a congenital heart disease patient lives nearby so they’ll be prepared in case there’s ever an emergency.
Going forward, the program may expand to older patients. Brock hopes to focus future efforts on neurodevelopmental outcomes and “how these kids develop throughout the course of their single ventricle life,” he said. Nationally, the NPC-QIC recently merged with the Fontan Outcomes Network to form Single Ventricle One (SV-ONE) in an effort to follow these patients beyond their palliation procedures into their teens and beyond.
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