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High Burden of Neurodevelopmental Delays in Children Undergoing Heart Transplantation in Early Childhood
Sammie James1, Chetna K Pande2, Sonia Monteiro3
1Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, TX, USA. sammie.james@bcm.edu.
Insights
Children needing heart transplantation (HTx) often experience neurodevelopmental delays (ND) and autism spectrum disorder (ASD). These delays persist post-transplant, highlighting the need for structured developmental follow-up in this high-risk pediatric population.
Area of Science:
- Pediatric Cardiology
- Neurodevelopmental Pediatrics
- Pediatric Critical Care
Background:
- Congenital heart disease (CHD) is linked to increased neurodevelopmental delays (ND).
- Neurocognitive outcomes for children requiring heart transplantation (HTx) in childhood are not well-documented.
- Early childhood HTx represents a critical period for neurodevelopmental assessment.
Purpose of the Study:
- To describe the neurocognitive outcomes of children undergoing heart transplantation (HTx) at age 2 years or younger.
- To identify the prevalence of neurodevelopmental delays (ND) and autism spectrum disorder (ASD) in this pediatric population.
- To assess the need for rehabilitative therapies post-HTx.
Main Methods:
- Retrospective cohort study of children undergoing HTx between 01/2017 and 12/2022 at age ≤2 years.
- Developmental follow-up and assessment in the Cardiac Developmental Outcomes Program (CDOP) clinic or by pediatrician.
- Analysis of binary ND, developmental quotient scores (motor, cognitive-aptitude, language), and secondary outcomes including therapy needs and ASD diagnosis.
Main Results:
- 93% of patients were diagnosed with ND, and 35% with ASD.
- Of those assessed in CDOP, 96% showed delays in at least one developmental area.
- Children with CHD had higher ND rates than those with cardiomyopathy; VAD support impacted language development.
- A downtrend in neurodevelopmental scores was observed up to age 4 years post-HTx.
Conclusions:
- Children undergoing HTx in the first two years of life are at high risk for persistent ND, ASD, and need for therapy.
- Structured neurodevelopmental follow-up is crucial for this high-risk pediatric population post-HTx.
- Early identification and intervention are key to managing developmental challenges in young children with heart failure requiring transplantation.
Abstract:
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. We performed a single center retrospective cohort study including all children undergoing HTx between 01/2017 and 12/2022 at age ≤ 2 years, 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. 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. 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.
