Neurodevelopment Among Publicly Insured Children in the First 5 Years After Infant Heart Surgery

Importance: Survivors of infant heart surgery for congenital heart disease (CHD) have high risk for neurodevelopmental (ND) disorders; few multistate data report the percentage with ND diagnosis or utilization across health care settings. Objective: To characterize time to and cumulative prevalence of any ND diagnosis and associated health care utilization in the first 5 years after infant heart surgery for publicly insured children. Design, Setting, and Participants: This retrospective cohort study included children with CHD with a birth hospitalization and infant cardiac surgery between January 2016 and December 2020. Data were obtained from the Merative MarketScan Medicaid Claims Database of deidentified individual Medicaid enrollees across 12 states. Data were analyzed from December 13, 2022, to October 4, 2024. Exposures: CHD and infant heart surgery. Main Outcomes and Measures: Times from index surgery to first ND diagnosis and ND utilization and their cumulative prevalences by 5 years after index surgery. Results: Among 3147 patients (mean [SD] duration of enrollment, 30.5 [17.4] months), 1686 (53.6%) were male; 619 (19.7%) were Black, 228 (7.2%) were Hispanic, 1051 (33.4%) were White, 145 (4.5%) belonged to additional racial and ethnic groups, and 1108 (35.2%) had missing data on race and ethnicity. Surgery was neonatal (