Children's Cardiomyopathy Foundation



Common Feelings

The possibility of deterioration or premature death associated with cardiomyopathy creates unique social and emotional issues for affected families. The fear and anxiety from living with a chronic illness and the lack of predictability can make raising a child with cardiomyopathy more challenging. As a parent, it is natural to feel a mixture of intense emotions such as fear, anxiety, sadness, anger, and guilt at different times:

  • Fear:You may be afraid of what may happen next especially if you suspect that your child's condition may deteriorate. You may fear that you will not be able to handle an emergency or that your child may actually die.
  • Anxiety: You may feel a tremendous amount of anxiety along with a preoccupation with your child's health due to the absence of a real cure and the unpredictability of the disease as your child grows. You may also be anxious about the high cost of medical care that your child needs. Eventually this state of anxiety and helplessness may evolve into depression.
  • Sadness: You may grieve for what is lost - a carefree family life and good health for your child. You may yearn for the time when things were okay and you did not have to worry so much. As your child grows, you may grieve for your child's inability to engage in certain activities or over social issues arising from peer pressure.
  • Anger: You may feel angry at God for allowing this to happen and letting you down. In some instances you may feel frustrated at life's unfairness and even feel anger seeing families with healthy children. At some point, you may resent the amount of time and attention that your child needs from you. You may also feel overwhelmed and frustrated when the disease does not respond to treatment or the condition progresses.
  • Guilt: You may feel guilty that you could have done something to prevent your child's disease or that the disease was not diagnosed sooner. If there is a strong family history of the disease, you may feel guilty for having transmitted the disease to your child. When your child encounters medical or social problems, you may also feel guilty for not being able to do more.

These are all common feelings faced by families with children with a chronic illness. You should give yourself time and space to accept the situation and learn how to express your feelings before they consume your life. Continually dwelling on these feelings can rob you of the energy you need to cope with the present and to plan for the future.

Handling Your Feelings

To avoid becoming a prisoner of the disease, it is important to enjoy your child and conduct your life as normally as possible. There are several ways to deal with your new situation and maintain a positive outlook: 1) learn more about the disease and diagnosis, 2) find support from others and 3) take care of your physical, mental and spiritual well being.

Gathering your own information via the Internet or local library may alleviate some fear of the unknown and allow you to be realistic about the future. Learn everything you can about pediatric cardiomyopathy, your child's diagnosis, tests that have been or will be performed, and available treatments. Some families also find it useful to learn about caring for someone with a chronic disease. There is an article, "Coping Tips for Caregivers: A to Z," that gives practical advice about how to deal with the long-term stress of caring for someone with heart disease.

When managing your own feelings, remember that you are not alone. During stressful times, it is easy to forget about your relationship with your spouse, your other children or other supportive family members. However, these relationships need equal attention to maintain a solid, caring family unit. Spend quality time with the important people in your life and keep the lines of communication open. If you or your family needs additional support, professional counseling can help everyone to better cope with the illness. Counseling may involve the whole family or an individual and can either be private or in a group. You can get service approval and a referral list from your health care provider for qualified psychologists and marriage, family and child counselors.

Seeking the advice of families who have dealt with a similar diagnosis can be encouraging and comforting. Group support can be especially helpful in the beginning stages and on a long-term basis. Although there may not be a support group in your community specifically for pediatric cardiomyopathy, there are other groups with similar concerns such as chronically ill children and children with congenital heart disorders. The Children's Children's Cardiomyopathy Foundation maintains a list of support groups on the Links and Resources section, and your medical center or local chapter of the American Heart Association may have other recommendations.

If your child has an advanced stage of cardiomyopathy, it is easy to forget about tending to your own physical and mental well being while caring for your child. During these times, you need to remember to take care of yourself and maintain a positive attitude. This means arranging some personal time, getting sufficient sleep, eating balanced meals and finding an outlet for stress. Some effective ways of coping with stress include exercise, sports, meditation, and breathing and relaxation exercises.

Dealing With Your Child's Concerns

As your child gets older, he/she may face different social and emotional concerns related to the disease. The best way to handle this challenge is to give some thought in advance as to how you will respond to each situation. Common feelings experienced by younger children are fear of what may happen to them or anger over less independence (related to taking medication, visiting the doctor or eating certain high calorie food). Older children may resent not being able to participate in certain activities or feel depressed because they are "different" from other children. Children approaching puberty may be more concerned with their appearance (if smaller than average) and ability to fit in with peers.

While your child passes through these psychological stages, you should try to manage your own feelings and present the positive so that your fears and sadness do not interfere with your child's coping process or outlook on life. Children are remarkably astute at picking up emotional cues of those closest to them, even though they may not talk about it. You can help your child overcome his/her fear of the unknown by educating him/her about what to expect. This may entail checking out a book about the disease at the local library, drawing or writing about it, or attending a hospital's pediatric program (i.e. Child Life Program) to better understand medical tests and procedures.

When your child is old enough to understand, explain in an age appropriate way why he/she has surgical scars, needs to take medication and needs to visit a pediatric cardiologist. Encourage your child to become involved in his/her own care and to be aware of certain warning signs for medical attention. As a result, your child will more likely be confident and positive about living with his heart condition.

Creating a climate that encourages and supports shared feelings can also help your child deal with his/her disease. Talk about sensitive topics in a time and place that is calm and is conducive to open communication. A young child may ask you difficult questions such as "Am I going to die?" or "What happens if the doctor can't fix my heart?". Experts advise parents to answer with a simple but truthful statement instead of providing a direct or complicated response. Young children generally do not need a detailed answer but they do need to feel that they can trust you to respond. On the other hand, older children may be reluctant to discussing their school or social problems, but you should still let he/she know of your availability to talk.

Another important point to keep in mind is that children with cardiomyopathy need to be made to feel a part of their peer group and not isolated because of their illness. Although it is understandable for parents to become overly protective, it is better for their child's development and self-image if parents support their child's efforts to live as normal of a life as possible. Therefore, parents should encourage their child to do all that he/she is capable of as long as it does not negatively affect his/her condition, such as avoiding medications or engaging in activities that are physically harmful.

If you find your child appearing lonely or feeling isolated, you can try putting him/her in contact with another child with cardiomyopathy or a congenital heart defect. Your child's cardiologist, local children's medical center or support groups are good sources of contact. There are also several camps especially for children with heart disorders. A listing of these heart camps can be obtained through the Congenital Heart Defects Resource Page.