2025 Annual Report

PATIENT CARE, QUALITY & SAFETY

“These first-time parents are not only learning how to parent but they’re learning how to parent a medically fragile child, so I think that’s a big challenge.”

BRITTNEY ABERCROMBIE, NP

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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2025 ACADEMIC ANNUAL REPORT