When a Child Has Heart Disease
by Wayne M. Sotile, Ph.D.

Each year, about 40,000 children are born with one of the 35 distinct types of heart defects, and scores of children and adolescents are diagnosed with some form of acquired heart disease, including Kawasaki disease, rheumatic fever and infective endocarditis. The challenges for helping a child to live well with heart disease are multiple.

First, parents must overcome their own guilt and curb any tendency to blame each other about the child’s illness. Typically, there is nothing that parents could have done to prevent this. The goal is to orchestrate positive coping, for the child and family. Remember that your child needs your help; guilt-tripping yourself or shaming each other into depression will leave your little one without a life raft.

Teaching your child how to speak about his or her heart disease is a crucial coping lesson. This starts with you learning how to do the same. Strategies here will vary, depending on your child’s age. It is especially important when talking with young children to avoid using words like “weak” “sick” “dangerous” or “brittle” when describing their heart disease. Little minds think in global terms, and your child is likely to believe that these terms apply to him- or her, in general.

Instead, try explaining that your child’s heart is special in a way that requires a little extra care. Frame medical care and visits to the doctor as taking time-out to nurture your child’s heart. And offer them hope that things will improve.

It’s also crucial that you remember that your child is about more than his or her disease; resist the temptation to constantly view the child through the lens of “heart patient”. For the most part, the normal childhood/adolescence stuff will still apply, and you will have to deal with it even though your concerns will be magnified by the fact that your child is a heart patient. Here, I’m referring to “stuff” of parenting like the following:
-Separation anxiety
-Sibling rivalry (this might be amplified by the attention given to a child with health problems)
-Identity issues. No adolescent feels great about him or herself, but adolescent heart patients sometimes hang their negative self-evaluations on their illness.
-Parental ambivalence or guilt in the aftermath of disciplining
-Getting your child to open up and talk about feelings and fears
-Conflicts with peers and feared or actual peer rejections
-Academic or other “work” ethic issues
-Plans for the future
-Launching from the family nest.
Rebellious behavior.
This last one deserves special mention, because when the psychology of child or adolescent rebellion is played out within the arena of cardiac care, a young heart patient may be in danger. As they age, many children with heart disease grow tired of the lifestyle restrictions or special medical devices or interventions necessitated by their illness.

Depending on the child’s age, rebellion against the illness may come in various forms. I’ve seen children (especially adolescents) with heart disease do all of the following, and more:
-Refusing to make heart-healthy lifestyle changes
-Refusing to avoid certain things for fear of being singled out by peers.
-Over-compensating. Some adolescent heart patients cope with a fear that they might not live a long life by throwing themselves into harm’s way; they engage in high-risk behaviors as though they are testing the gods.
Finally, I must note that, for some, the getting diagnosed with heart disease "freezes' their development. The feeling that they are different from peers interferes with the self-confidence needed to fly from the family nest and construct a productive, independent life. Others long for a peer group of same-age peers who are also living with heart disease. (At least one leading company, Medtronic, Inc., sponsors an adolescent ICD patient e-based support service. Phone 1-800-328-2518 for information from Medtronic. Other leading makers of ICD's also offer support services. Phone 1-800-777-2237 for St. Jude Medical; and 1-800-CARDIAC for Guidant.).
There is much more to be said about this topic. Here, I simply want to encourage you to let heart disease spur you and your family to embrace each other with renewed appreciation and love. With advances in medical science, this will hopefully be for a full lifetime.

Take care of yourself:

Parents who take care of themselves and each other give their children the ultimate gift: a never-ending "safe-space" of fresh parental energy. Here are some tips:

Get the help you need:

-Parenting a child with any chronic illness proves the wisdom in the adage that "it takes a village" to do it right. You will need practical guidance about various child-rearing and medical issues. And your child will benefit if the teachers, coaches, and other adults involved in his or her life understand what he or she can or cannot do due to heart disease. Educate them.

Get support:
Pave the way for your child to receive the support and benefit that comes from counseling by engaging in counseling yourself. Single or divorced parents are at special risk of suffering from the loneliness and confusion that may come with parenting a child with a chronic illness. And couples must be aware of the marital problems that will come if one of you decides that “this child should be treated normally; no giving in to the illness” while the other parent decides “This child has special needs, and we must act accordingly.” Get some help in sorting all of this out!

Put your differences aside:

-Whether they are married to each other or not, parents of a child with heart disease need to understand that they have an additional parenting task: checking and re-checking with each other to make sure that they’re on the same page as they decide how to deal not only with their child’s medical condition but also with their child’s developmental issues at each stage along the journey.

I remind you that having a child with heart disease (a lifetime condition) is not the same as having a “sick child” (as in one with the flu or pneumonia). Parents need to get on with their lives. Your child will cope better if you avoid despairing by taking good care of yourself. Take time to get away with friends, to nurture yourself, and for your own romance (if you have one!). If you are especially anxious about your child’s condition, do what you need to do to insure that he or she is in good hands and that you can be reached if an emergency happens. But go!

This article was adapted from information presented more fully in Thriving With Heart Disease, by W. Sotile with R Cantor-Cook. New York: The Free Press, 2003. Copyright W. Sotile, 2003. All rights reserved.

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