February is heart month, and organizations around the country are offering stories of hope, ideas for prevention, and good information about treatment for heart conditions. What’s largely missing from this dialogue are ideas for dealing with the emotional side of coronary conditions. This is especially true with young patients:
According to the Centers for Disease Control (CDC), about 1 percent of babies born in the United States are affected by congenital heart defects and in the years 1999-2006, there were 41,494 neonatal deaths associated with heart conditions. These conditions often lead to or co-occur with many other types of physical and cognitive challenges. Again, what is missing from these statistics is the emotional impact on affected children. Heart disease is scary. It may limit a child’s ability to participate in normal activities, and even if the condition itself isn’t limiting, children with heart conditions (and their parents) may be limited by fears that exertion or injury could provoke the condition. That said, the American Heart Association writes that, “It’s likely that for most patients, the benefits of exercise outweigh the perceived risks.”
Inside that quote is an important truth about the emotional side of pediatric heart conditions: With pediatric heart conditions, there is often a disconnect between a patient’s perception and reality. One thing you can do as a parent or provider working with these kids is to gather and organize as much information as you can about the specifics of their condition — when you talk to the child’s cardiologist about activity restrictions, write it down! This will keep you from mis-remembering later. And then help the child and his/her support system understand the do’s and don’ts of restrictions. So much of a child’s social and psychological well-being depends on the physical expression of self — if this physical expression really must be limited due to health concerns, then so be it. But if not, do your best to ensure the child’s physicality isn’t limited by the misinterpretation or misconceptualization of risk.
That said, some heart conditions will mean that a child has to look beyond athletics for the recognition of personal achievement. Instead, you can help medically challenged children find other areas of personal excellence… and more importantly, the social interactions that come from activities. Ask what does your child love? Is it art, music, math, gaming? Your child’s heart doesn’t have to limit their engagement with the world of ideas!
Basically, both of these ideas suggest working to help your child feel successful — as if his or her heart condition doesn’t make them feel somehow “less than” their peers. Let doctors do the tests and the procedures. But it may be up to you to help the medically complex child in your life feel limitless.