High Burden of Neurodevelopmental Delays in Children Undergoing Heart Transplantation in Early Childhood

Introduction – Children with congenital heart disease (CHD) have an increased burden of neurodevelopmental delays (ND). However, the neurocognitive outcomes of children with heart failure needing heart transplantation (HTx) in childhood are not well described. Methods – We performed a single center retrospective cohort study including all children undergoing HTx between 01/2017 and 12/2022 at age < 2years, who had developmental follow up and assessment either in the Cardiac Developmental Outcomes Program (CDOP) clinic or by their pediatrician. ND was analyzed as a binary categorical variable as well as developmental quotient scores for motor, cognitive-aptitude, and language development through testing in the CDOP clinic. Secondary outcomes included need for occupational/physical/speech therapy and autism spectrum disorder (ASD) diagnosis. Results – Forty patients met inclusion criteria, of whom 22 were evaluated in CDOP clinic. 93% were diagnosed with ND and 35% with ASD. Of those tested in CDOP, 96% showed delay on at least one of the tests. Patients with CHD were more likely to be diagnosed with ND in childhood compared to those with cardiomyopathy (p<0.05). Bridge to HTx on ventricular assist device (VAD) support was associated with differences in language development testing at 36 months (P<0.05). There was a downtrend in neurodevelopmental testing scores over time beyond the age of HTx up to 4 years of age. Conclusions – Children undergoing HTx in the first 2 years of life are a high-risk population for ND that persist after HTx, ASD, as well as rehabilitative therapy needs. Structured neurodevelopmental follow-up should be prioritized for this population.