Survivors of congenital heart disease (CHD) are at greater risk for neurodevelopmental issues from both biological and environmental risk factors when compared with heart-healthy children. As survival rates in CHD have improved, the focus of clinical research has transitioned from striving for short-term survival to enhancing long-term morbidity.
How common is neurodevelopmental impairment? View figure.
A New Scientific Statement on CHD
In the July 30, 2012 online issue of Circulation, my colleagues and I from the American Heart Association (AHA) released a scientific statement reviewing factors that increase risk for developmental disorders in those with CHD. The statement provides an algorithm for treating these developmental disabilities and stratifies risk; age-based management of CHD patients is also reviewed. The statement also discusses the impact of developmental disorders on quality of life for these individuals.
A key recommendation is that children born with CHD should receive early evaluation for related neurodevelopmental disorders. High-risk patients should be referred for further developmental and medical evaluation. Developmental disorders can be identified and managed with continuous surveillance, appropriate screening, early evaluation, periodic reevaluation, and continuous, comprehensive treatment coordinated by a central care provider.
Other recommendations include:
Establishing a “medical home” to coordinate care between various specialists.
Reassessing risk of developmental disorders each time the medical home is visited.
Referring high-risk patients with CHD for early interventions before developmental disorders are formally diagnosed.
Conducting periodic re-evaluations throughout infancy and childhood at 1 to 2 years, 3 to 5 years, and 11 to 12 years of age for developmental disorders in children with CHD deemed high risk.
Considering potential benefits from higher-education or vocational counseling when high-risk children reach young adulthood.
Conditions Increasing Risk Among CHD Survivors
The AHA statement also identifies conditions that increase risk for developmental disorders among CHD survivors, including open heart surgery in infancy, having a congenital heart defect that results in the child being chronically “blue,” or a combination of CHD and several other considerations. These include premature birth, developmental delay as a baby, suspected genetic abnormalities or syndromes, a history of mechanical support, and heart transplantation.
Ultimately, identifying developmental problems earlier in life is likely to enable clinicians to help prevent issues that can impede children with CHD. With recent advances, we’re capable of helping them survive and thrive to achieve their full potential.
Readings & Resources (click to view)
Marino BS, Lipkin PH, Newburger JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012 Jul 30 [Epub ahead of print]. Available at: http://circ.ahajournals.org/content/early/2012/07/30/CIR.0b013e318265ee8a.long.
Warnes CA, Williams RG, Bashore TM, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). J Am Coll Cardiol. 2008;52:e143-e263.
Shillingford AJ, Glanzman MM, Ittenbach RF, et al. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics. 2008;121:e759-e767.
van Rijen EH, Utens EM, Roos-Hesselink JW, et al. Psychosocial functioning of the adult with congenital heart disease: a 20-33 years follow-up. Eur Heart J. 2003;24:673-683.
Kovacs AH, Sears SF, Saidi AS. Biopsychosocial experiences of adults with congenital heart disease: review of the literature. Am Heart J. 2005;150:193-201.
Green A. Outcomes of congenital heart disease: a review. Pediatr Nurs. 2004;30:280-284.
Mahle WT, Wernovsky G. Long-term developmental outcome of children with complex congenital heart disease. Clin Perinatol. 2001;28:235-247.