The unpredictable nature of pediatric cardiomyopathy creates unique social and emotional issues for affected families. Common feelings experienced by children with cardiomyopathy are:
You can help your child learn about cardiomyopathy and educate others around him/her to understand his/her heart condition. As your child gets older, encourage him/her to take responsible for his/her own medical care. It is important to be patient with your child as he/she learns to cope with having cardiomyopathy. Keeping the lines of communication open and staying positive will help. Even though you may have fears and anxieties, try not to transfer your feelings to your child as it could influence his/her coping process and outlook on life.
Learning about the Disease
You can help your child overcome his/her fear of the unknown by educating him/her about cardiomyopathy and what to expect. When your child is old enough to understand, it should be explained in an age appropriate way that he/she has cardiomyopathy, what it is, why he/she needs to take medication and why he/she needs to visit a pediatric cardiologist. For the younger child, CCF has a booklet, Cardiowhat? that explains cardiomyopathy in an interesting and fun manner. A child life specialist can recommend other relevant books such as ones on medical tests and procedures. A child life specialist is a pediatric health care professional who has expertise in helping children and their families cope with the challenges of hospitalization and illness.
For the older child, CCF offers a DVD, Secrets of the Heart – Living with Pediatric Cardiomyopathy, which profiles three teens living with cardiomyopathy. As a parent, encourage your child to become more involved in his/her own care and to be aware of certain warning signs for medical attention. Having this knowledge should help your child be more confident and positive about living with his/her heart condition.
Creating an environment that supports shared feelings can help your child deal with his/her disease. Talk about sensitive topics in a place that is calm and encourages open communication. A young child may ask difficult questions such as "Am I going to die?" or "What happens if the doctor can't fix my heart?" Parents should answer with a simple but truthful statement instead of giving a detailed response. On the other hand, an older child may be reluctant to discuss their school or social problems related to the disease. You should still let him/her know that you are available to talk.
Connecting with Other Kids
Your child may face different social and emotional concerns related to the disease when he/she gets older. Children approaching puberty may be more concerned with their appearance (if smaller than average) and ability to fit in with peers. Children with cardiomyopathy need to feel a part of their peer group and not isolated because of their illness. It is important to a child's development and self-image if parents support their child's efforts to live a normal life. Your child should be encouraged to do all that he/she is capable of, as long as it does not negatively affect his/her heart condition such as not taking daily medications or engaging in activities not approved by the cardiologist.
If your older child appears lonely or feels isolated, you can try putting him/her in contact with another child with cardiomyopathy. CCF offers several youth programs to help teens with cardiomyopathy connect with each another. For more information about CCF’s Youth Connect Facebook group and Heart Buddy Program, please visit CCF’s Youth Programs page.