Research Matters: Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

Conquering CHD is thrilled to bring you a new series titled Research Matters. In their commitment to make research meaningful and accessible to patients and families, members of our Medical Advisory Board have created summaries of important research and describe what it means for you.

research matters

Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

By Erica Sood, PhD, Pediatric Psychologist

The journal Pediatrics recently published a study examining how cognitive, language and motor development change over time in young children with CHD.* Findings highlight the importance of repeated developmental evaluations for children with complex CHD to identify those who may benefit from early developmental intervention. You can find the complete study here.


About this Study:
  • The purpose of this study was to evaluate changes in cognitive, language, and motor skills during the first three years of life in children with CHD.
  • The study sample consisted of 99 children who participated in three or more developmental evaluations through the Herma Heart Center Developmental Follow-up Clinic at Children’s Hospital of Wisconsin.
  • The Bayley Scales of Infant and Toddler Development, Third Edition was completed as part of the developmental evaluation. This is a commonly used developmental test that measures a child’s cognitive, language and motor skills through a series of play activities.


Main Findings:
  • Most children (75%) exhibited delay in one or more developmental areas at some point during the first three years of life.
    • While delays were often mild, more severe delay occurred in 74% of children with a known genetic syndrome, 33% of children with single ventricle anatomy, and 21% of children with two-ventricle anatomy.
  • Nineteen percent of children whose development was in the average range at one year of age were later found to have a delay in one or more developmental areas.
  • During infancy, children tended to have greatest difficulty with motor skills. For children without known genetic syndromes, motor development improved over time and was typically within the average range by three years of age. Children with genetic syndromes generally continued to exhibit delays in motor skills throughout the first three years of life.
  • Children who required longer cardiopulmonary bypass time and supplemental tube feeding and who were hospitalized more recently tended to have greater difficulty with developmental tasks.
What this Means:
  • Developmental delays in children with CHD are common and should be expected. Children with genetic syndromes and those who require longer cardiopulmonary bypass times, supplemental tube feeding, or frequent hospitalizations appear to be at particularly high risk for developmental delays.
  • Repeated developmental evaluations should be standard of care for children with complex CHD to identify those who may benefit from early developmental intervention. Repeated developmental evaluations for children with complex CHD is recommended by the American Heart Association and the American Academy of Pediatrics.
    • Many of the delays exhibited by children with CHD were mild and may not have been identified without a formal developmental evaluation. Even mild delays, without intervention, can impact later development and learning.
    • In some children, delays emerged over time and may not have been identified through a developmental evaluation at a single time point.
    • When developmental delay is identified, early developmental intervention (for example, physical therapy or speech therapy) can help the child meet developmental milestones and reach his or her full potential.

For more information about developmental evaluation for children with CHD, please see the Cardiology Patient Page titled Supporting Development in Children with Congenital Heart Disease.

*Mussatto KA, Hoffmann RG, Hoffman GM, Tweddell JS, Bear L, Cao Y, Brosig C. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics 2014; 133: e570-e577


Dr. Sood is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University. She received her PhD in Clinical Psychology from Temple University and completed residency and fellowship in Pediatric Psychology at Nemours/duPont Hospital for Children. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and provides psychological consultation and therapy for children with congenital heart disease and their families. Dr. Sood also conducts research on neurodevelopmental outcomes, developmental care and family psychosocial interventions for this patient population. She serves on the editorial board for Clinical Practice in Pediatric Psychology and is an active member of the Society of Pediatric Psychology’s Cardiology Special Interest Group and the Cardiac Neurodevelopmental Outcomes Collaborative. Dr. Sood provides supervision and mentorship to psychology fellows working within the Nemours Cardiac Center to promote psychologist involvement in the field of pediatric cardiology.

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