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Early Neurodevelopmental Outcomes in Children With Congenital Heart Disease
Mike Seed1, Dawn Ilardi2, Valerie Rofeberg3
1Division of Cardiology, Department of Paediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
JAMA Network Open
|June 1, 2026
Summary
Children with congenital heart disease (CHD) show varied neurodevelopmental outcomes based on cardiac diagnosis. Genetic diagnoses are linked to lower scores, highlighting the need for ongoing surveillance in infants undergoing heart surgery.
Area of Science:
- Pediatric Cardiology
- Neurodevelopmental Pediatrics
- Congenital Heart Disease Research
Background:
- Neurodevelopmental impairments are prevalent in children with congenital heart disease (CHD).
- Understanding factors influencing these outcomes is crucial for early intervention and improved long-term health.
- Early neurodevelopmental outcomes can be impacted by various medical and social determinants.
Purpose of the Study:
- To compare neurodevelopmental outcomes among children with CHD based on their specific cardiac diagnosis.
- To identify associations between medical and social factors and early neurodevelopmental outcomes in this population.
Main Methods:
- A cross-sectional analysis of neurodevelopmental follow-up data from the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) registry.
- Included children younger than 30 months who underwent cardiac surgery before 12 months of age.
- Utilized Bayley Scales of Infant and Toddler Development-III/4 for cognitive, language, and motor assessments; analyzed factors via multivariable regression.
Main Results:
- 942 assessments from 868 children were analyzed.
- Children with genetic diagnoses (11.8%) scored significantly lower across all neurodevelopmental indexes compared to those without.
- Cardiac diagnosis, lower birth weight, male sex, older age at surgery, longer hospital stay, and lower caregiver education were independently associated with poorer outcomes.
Conclusions:
- Significant variation exists in neurodevelopmental outcomes among children with CHD, influenced by cardiac diagnosis and genetic factors.
- The presence of a genetic diagnosis consistently correlated with lower neurodevelopmental scores.
- These findings underscore the importance of systematic neurodevelopmental surveillance for all infants undergoing heart surgery within the first year of life.
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