Intellectual disabilities and autism among children with congenital heart defects, Western Australia, 1983–2010

Children with congenital heart defects (CHDs) are at higher risk of developing an intellectual disability. However, severity of intellectual disabilities among this group of children are largely unknown. Our objective was to determine the risk of intellectual disability (ID), ID severity, and autism among children with CHDs.

Citation

Bircan, E., Politis, M.D., Gokun, Y, Luo, C., Leonard, H., Bourke, J., Bower, C., Nembhard, W. Intellectual Disabilities and Autism in Children with Congenital Heart Defects Born in Western Australia, 1983-2010. BMC Pediatrics. (2023)

Background

Specific mechanisms by which children with congenital heart defects have an increased risk of developmental disabilities is not always clear. Intellectual disabilities can result from a complex mix of factors affecting development before, at or after birth. Congenital heart defects can be part of genetic and other syndromes that also include neurodevelopmental impairments. The purpose of this study was to determine the risk of intellectual disability and autism among children with congenital heart defects in a population-based study.

What we did

All singleton births in WA 1983-2010 were linked to the Western Australian Register of Developmental Anomalies (WARDA), a State-wide surveillance system which ascertains birth defects identified in children up to 6 years of age, to identify children with congenital heart defects (mild, moderate, severe). A random selection of children without congenital heart defects was chosen as a control group. Diagnosis of intellectual disability or autism was obtained through linkage to the IDEA database. Infants with Down syndrome (n = 303) were excluded from the main analysis as they are more likely to have a congenital heart defect. Odds ratios were calculated to show risk of intellectual disability or autism.

What we found

Compared to children without congenital heart defects, children with any congenital heart defect had a 5.3 fold increased odds of having an intellectual disability and 4.7 times odds of having mild/moderate intellectual disability. Children with any congenital heart defect had 1.8 times the odds of having autism and 3.3 times the odds of having an unknown cause of intellectual disability, compared to children without congenital heart defects.

What it means

Children with congenital heart defects were more likely to have an intellectual disability or autism. Further development of early interventions to optimize neurodevelopmental outcomes in children with congenital heart defects in Western Australia is needed to improve long-term outcomes for these children.