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Children with congenital heart disease at increased risk for developmental disorders
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Children with congenital heart disease should receive early evaluation and treatment for related developmental disorders, disabilities or delays, according to a recent scientific statement from the American Heart Association, approved by the American Academy of Pediatrics.
Experts reviewed available literature on surveillance, screening, evaluation and management strategies in the pediatric congenital heart disease population and developed a scientific statement that provides recommendations to help optimize the neurodevelopmental outcomes in these patients.
The writing group was composed of experts appointed by the AHA and the American Academy of Pediatrics. Related literature was chosen from articles published between 1966 and 2011.
The scientific statement, intended for medical providers within the medical home who care for patients with congenital heart disease, identifies conditions and circumstances that increase the risk for developmental disorders among survivors. These include having open heart surgery; having a congenital heart defect that results in the child being chronically “blue”; or having a congenital heart defect in combination with one of the following issues:
- Premature birth.
- Developmental delay as a baby.
- Suspected genetic abnormality or syndrome.
- History of mechanical support to help the heart.
- Heart transplantation.
- History of cardiopulmonary resuscitation.
- Prolonged hospitalization during the child’s heart care.
- Seizures related to heart surgery.
- Brain abnormalities found on brain imaging.
The statement recommends assessing risk level and referring high-risk patients for further evaluation, both medical and developmental. Other recommendations include:
- Establishing a medical home, which is usually the primary care provider, to coordinate care among all involved specialists.
- Reassessing the risk for developmental disorders at every visit to the medical home because risk may change as a child grows.
- Referring high-risk children for early intervention even before a developmental disorder is formally diagnosed.
- Re-evaluating high-risk children with congenital heart disease throughout infancy and childhood at ages 12 to 24 months, 3 to 5 years and 11 to 12 years.
- Providing high-risk young adults with higher-education or vocational counseling as a benefit.
“If we identify developmental problems earlier, we’re going to help prevent issues from coming up in school that prevent these children from achieving their fullest potential,” Bradley S. Marino, MD, co-chair for the scientific statement’s writing group and associate professor of pediatrics at the University of Cincinnati College of Medicine, said in a press release. “In the past, we were happy if they survived. Now, we want them to survive and thrive.”
For more information:
Marino BS. Circulation. 2012; doi:10.1161/CIR.0b013e318265ee8a.
Disclosures: Dr. Mahle has received a research grant from Bristol-Myers Squibb. Dr. Li has received research grants from Genzyme, GlaxoSmithKline and Sanofi-Aventis and is a consultant/advisor to PTC Therapeutics Inc. Dr. Lipkin is a consultant/advisor to Bristol-Myers Squibb and InfaCare Pharmaceutical Corp. Dr. Newburger is a consultant/advisor to Bristol-Myers Squibb. Dr. Dowling has received a research grant from Doris Duke Charitable Foundation. None of the other members of the writing group or the reviewer group have any conflicts of interests to disclose.