Congenital Heart Defects: Moving Towards Longer and Better Lives :

Congenital heart defects (CHD) occur in almost 1% of live births.¹ Historically, many of these defects were considered severely debilitating or lethal, and affected children were often given severe restrictions on activity. But these outcomes have fundamentally changed, and the majority of children with CHD are now living well into adulthood. In this population, focus is shifting from reducing mortality to optimizing the health and function of these children throughout their lifespan, and our counseling needs to reflect these goals.

In the November issue of Pediatrics, Bolduc, et al ² systematically review motor impairments in children who have undergone open-heart surgery for CHD, and their findings will be eye-opening for many (10.1542/peds.2020-0083). Although the degree of these impairments is highly variable, overall, about one-third of these children have motor development delay. The challenge is that many of these children will have consequential motor impairments that are not discernible during a pediatric office visit, and Bolduc and her co-authors emphasize the importance of adhering to the American Heart Association recommendation that all children who have undergone open-heart procedures should be referred for formal developmental evaluation and early intervention.³ Motor function is a key health determinant for all children, but is particularly important in this population. Making sure children benefit from any advantage to optimize their mental and physical development helps assure that they have the underlying motor skills to pursue healthy levels of physical activity is an important step in this direction.

Many of these children with medical complexities were very sick throughout their early years, and counseling their families can be challenging. The 2017 AAP policy statement on caring for children with CHD encourages providers to consider providing families with an “exercise prescription rather than restriction."⁴ Practical information for guiding these families can be found in the 2015 Bethesda Guidelines, which includes recommendations for activity in patients with CHD.⁵These recommendations are concise and specific to individual diagnoses, and are very helpful when trying to encourage and reassure patients and families regarding the safety of different forms and levels of physical activity.

Children who have undergone open-heart surgery for CHD are at high risk for a variety of poor physical and mental health outcomes. Addressing motor deficits and encouraging appropriate participation in exercise (and, yes, even sport!) are worthwhile endeavors to help assure the longest and healthiest possible lives for these children. 

References:

1. Dolk H, Loane MA, Abramsky L, de Walle H, Garne E. Birth prevalence of congenital heart disease. Epidemiology. 2010 Mar;21(2):275-7; author reply 277. doi: 10.1097/EDE.0b013e3181c2979b. PMID: 20160570.
2. Bolduc M-E, Dionne E, Gagnon I, Rennick JE, Majnemer A, Brossard-Racine M. Motor Impairment in Children With Congenital Heart Defects: A Systematic Review. Pediatrics. 2020:e20200083.
3. 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;126(9):1143-72
4. Lantin-Hermoso MR, Berger S, Bhatt AB, et al. The Care of Children With Congenital Heart Disease in Their Primary Medical Home. Pediatrics. 2017;140(5):e20172607.
5. Evangelista J-aK, et al. Eligibility and Disqualification Recommendations for Competitive Athletes With Cardiovascular Abnormalities: Task Force 4: Congenital Heart Disease. Circulation. 2015;132(22):e281-e291.