Kids Should Play and Grown-ups Can Too, even if they have Congenital Heart Disease

In a well-argued and timely statement, the AHA’s Atherosclerosis, Hypertension and Obesity in Youth Committee a writing group supports active encouragement of physical activity in all children and adults, including, perhaps especially, those with congenital heart disease. Background on this seemingly obvious suggestion will bring it’s audacity into stark relief.

Physical activity is in dramatic retreat from entire societies, in some relation to the rise in per-capita income as a likely proxy for increased leisure time, less physically active work for children and adults, and adoption of foreign dietary habits as normative. Current estimates from the Global Burden of Disease 2010 estimates rank the independent burden of disease attributable to low physical activity and inactivity ranged from as high as the 4th leading risk factor in high income-low infant mortality regions to no lower than 16th leading in low income-high infant mortality regions.¹ This again ignores knock-on effects from healthy amounts of exercise. Indeed the World Health Organization meta-data show the prevalence of insufficient physical activity ranges around 35-40% in most low-per capita income WHO regions while high income regions have prevalence of up to 50%.² Low physical activity is pandemic.

As the U.S. public’s attention is slowly swinging toward the crushing burden of lifestyle related disease affecting us all, outdated and daresay dangerous misconceptions are percolating and proliferating. There is a conception that one can ‘run away’ from lifestyle related disease, i.e. that time limited, perhaps even painful, bursts of physical activity can masochistically expunge long-term insults from inactivity and poor diet and further that attainment of a body shape ideal is equal to cardiovascular disease (CVD) health. Instead, what is becoming increasingly clear is that aerobic activity, anaerobic activity, and inactivity may be independent actors on CVD health.^3-5 Mild bouts of mild-to moderate activity can prevent CVD events independent of inactivity periods or other factors.^6-9 The writing group reminds us that neither Olympic-level fitness nor incessant activity is necessary to make important CVD improvements. Small amounts of physical activity are useful and effective. Minimizing inactive screen time and avoiding altogether in young children is also advised.

The benefits of physical activity are numerous. While mercifully the writing group did not catalog them all, a few notable mentions include direct cardiac, skeletal muscle, peripheral vascular, optimal weight, fitness, and emotional well-being. This last benefit is of utmost relevance as clinical providers must critically reexamine their internal set-point: are we to allow weak evidence on the relation between exercise and certain severe forms of CHD to limit possible activities in children with milder forms of CHD or even repaired CHD. For example, the busy clinicians may use idiosyncratic ‘rules-of-thumb’ to recall that weight-lifting in Marfan’s syndrome-related extreme aortic dilation is imprudent, therefore restricting weight lifting in a growing child with an incidentally found aortic root z score of 2.5 is prudent. The writing group strongly suggests this imprecise approach should be rethought, especially if interpreted by parents to proscribe trying out for kicker on the football team because ‘weight-lifting’ may be required. Being a member of the football team may be a tremendous triumph for a child who has struggled with CHD and barring him from this triumph due to an imprecision or misinterpretation, since no more than submaximal lifting seems appropriate for the kicker, seems a tragedy. The default response should be to allow and encourage at least some type of physical activity in every child; any subsequent restrictions should be specific, precise, and evidenced based to avoid misinterpretation.

Lest providers bear all the burden, the role of the ‘vulnerable child’ syndrome cannot be discounted.¹⁰ While the statement is intended for providers, families play a vital role in permitting and encouraging activity vs. inactivity. Having a child who has struggled with CHD, interventions for CHD, and complications of CHD, can induce suffering in families as well as patients. Families understandably can fall into a mindset of cosseting the child in cocoon of leisure and passivity because in some rough sense of justice, the child has unfairly struggled enough and more struggle just seems cruel. In this kind of paradigm, parents may deem inactive screen time a balm for time suffered and subjection to physical activity as intensifying the harshness of life. Add to that any developmental limitations precipitated by the CHD or related issues, and the sense of injustice may be intensified. Clinicians must leverage their most valuable tool, trust, to remind families of the importance of physical activity, identify and overcome limitations to exercise, vigorously test for physical activity capacities, assess actual physical activity, and motivate or outsource motivation of children and adults with CHD to become more active. Persons with CHD are more, not less, vulnerable to atherosclerotic CVD. Now that there are more adults with CHD than kids with CHD, parents should be reoriented to a much longer time horizon and getting the children prepared for the future everyone wants and has been working toward.¹¹ Developmental limitations should be screened often, identified, and treated as early as possible. Since providers and even exercise professionals are often unqualified and often dismally ineffective in administering evidence-based motivational interviewing and enhancement techniques, the writing group takes a bold stand in favor of engaging specially trained persons to activate patient motivation and details specific ‘dimensions’ that should be addressed point-by-point in those individuals motivated to increase physical activity . While it is true that you can lead the horse to water but can’t make it drink, there is reasonable data identifying standardized, reproducible ways to raise the likelihood of a sip. Parents should be reminded that playing with other children is not punishment, it’s the point. Kids should play actively, even if the heart is a little broken.

Since there are some data suggesting that children with arrhythmias, ventricular dysfunction, aortic dilation, syncope, hypoxia, anticoagulation concerns, and implanted devices have widely purported special exercise concerns. Rather than pitting short term risk of complications and long term risk of atherosclerotic CVD in opposition, diligent attention is paid to advancing coherent guidelines that protect health both time scales, with prudent deference to Heart Rhythm Society, Bethesda conference guidelines, and 2004 AHA guidelines on genetic CVD.

Finally the statement details point-by-point suggestions on how to proceed in patient care, including policy and advocacy positions for providers to consider, and concludes with some excellent suggestions for future investigations. One wishes the group had imparted more collective wisdom on specific aspects of physical activity that providers with limited experience in physical activity could use to make better decisions. For example, perhaps some providers are unsure as to whether football linemen are more likely to be compelled to engage in maximal weight lifting than kickers. Notwithstanding areas for future exposition, the writing group does yeoman’s work in empowering CHD providers to reduce the future burden of atherosclerotic CVD in a high-risk population through physical activity.