Beyond Surgical Palliation Success: Uncovering the Profound Mental Health Burden Among Children With Hypoplastic Left Heart Syndrome in the United States

Objective Major initiatives have assessed the burden of mental health in children, but longitudinal analysis of incidences in hypoplastic left heart syndrome (HLHS) is limited. We performed an analysis of neurodevelopmental and mental health conditions (NDMHC) on the single-ventricle journey. Methods The Pediatric Health Information System (PHIS) registry was queried for pediatric patients (<18 years of age) with International Classification of Diseases codes for HLHS from 2004 to 2024. Patients without birth admission and no Stage-I-palliation were excluded. Results The study included 9348 children and 2617 were diagnosed with an NDMHC. A 1-year-old child had an NDMHC incidence of 2% [1%-2%], a 5-year-old of 12% [11%-13%], a 10-year-old of 27% [25%-20%], and an 18-year-old of 55% [48%-62%]. If overall in-hospital days increase above the 75 th percentile, the incidence increases to over 65%. Children with NDMHC were more likely treated at low-volume centers (NDMHC: 34% vs No NDMHC: 23%, P < .001) and came from low household income environments (NDMHC Low Income: 27% vs No NDMC Low Income: 24%, P < .001). Cox regression for the development NDMHC revealed prolonged hospitalization (75 th total hospitalization length of stay) (2.26 [2.01-3.53], P < .001), treatment at low-volume centers (4.30 [2.72-6.81], P < .001) and low-income household (3.84 [3.10-5.71], P < .001) were predictors for NDMHC development. Conclusion As a successfully palliated child enters adulthood, over half will have a neurodevelopmental and mental health condition. This percentage increase significantly as the overall days spent in-hospital increases. This report urges congenital cardiac providers to explore strategies to mitigate the mental health burden.