Three-Year Post-Neonatal Intensive Care Unit Health Care Utilization Among Infants with Congenital Anomalies

Abstract

ObjectiveTo describe three-year post-NICU healthcare utilization among children with congenital anomalies discharged home from a level IV NICU Study DesignRetrospective chart review of children with congenital anomalies enrolled in a prior prospective cohort study from 2016-2020. We assessed hospital readmission rate, number of surgeries, and durable medical equipment (DME) use by type of anomaly. ResultsAmong 166 infants enrolled in the original study, 158 survived to NICU discharge. One-third of the cohort had a genetic anomaly. Six out of 158 patients (4%) died before age three. More than half the children were readmitted within the first two years of life and a third were readmitted in the third year of life. Readmissions were highest for those with multiple, musculoskeletal (MSK), and central nervous system (CNS) anomalies, and lowest for abdominal wall defects. About 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 (G-tubes) being the most common. G-tubes were still present in 75% of the patients at three years of age. ConclusionChildren with congenital anomalies are at risk for increased healthcare utilization during early childhood. Those with multiple anomalies, a genetic syndrome, MSK, and CNS anomalies and those discharged with DME are at highest risk while 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.