03/12/2026
Parents of children with a rare heart birth defect called single-ventricle now have a clearer picture of the burdens their child will face, thanks to research lead by Duke Health.
The study followed more than 500 patients born with condition for over 16 years. It found that that only 12% reach adolescence without a major complication.
Duke Children’s Kevin Hill, M.D., the corresponding author of the study, said the findings also offer some hope, suggesting there are ways health care providers can tailor care to improve outcomes for the children.
The research introduces a global rank score, a measure developed with input from families that captures what matters most to them, including daily functioning, quality of life, and heart performance.
“These children need lifelong comprehensive care, including medical, developmental, and school support,” Hill said. “It’s not like they get surgery and are ‘fixed.’ Ongoing, coordinated services are essential to help them thrive.”
Hill is chief of division of pediatric cardiology and professor in the Department of Pediatrics at Duke University School of Medicine.
Read more about the study: https://corporate.dukehealth.org/news/16-year-study-finds-major-health-burden-single-ventricle-heart
Duke Children's | Duke University School of Medicine | JACC Journals | American College of Cardiology | | |
