To describe 3-year post-neonatal intensive care unit (NICU) health care use among children with congenital anomalies discharged home from a level IV NICU.

Retrospective chart review of children with congenital anomalies enrolled in a previous prospective cohort study from 201 to 2020. We assessed hospital readmission rate, number of surgeries, and durable medical equipment (DME) use by type of anomaly.

Among 166 infants enrolled in the original study, 158 survived to NICU discharge. One-third of the cohort had a genetic anomaly. Six of 158 patients (4%) died before 3 years of age. More than one-half the children were readmitted within the first 2 years of life, and one-third were readmitted in the third year of life. Readmissions were greatest for those with multiple, musculoskeletal, and central nervous system anomalies and lowest for abdominal-wall defects. Approximately one-half the children underwent surgeries, and this proportion remained constant over the 3-year time. Sixty-two percent of patients received DME at discharge, with gastrostomy tubes being the most common. Gastrostomy tubes were still present in 75% of the patients at 3 years of age.

Children with congenital anomalies are at risk for increased health care use during early childhood. Those with multiple anomalies, a genetic syndrome, musculoskeletal, and central nervous system anomalies and those discharged with DME are at greatest risk whereas those with abdominal-wall defects are at lowest risk. Provider awareness, high-quality discharge training, parent psychological support, greater assimilation of families in the NICU, and telehealth may be some strategies to better support these families.