Family Response

Having a child with heart disease is an important event for the whole family. In most instances, the diagnosis affects each family member in some way. The impact will vary with the personality of the family and the severity of the illness. However, it is safe to assume it will cause some disturbance and concern. As your family grows, both physically and emotionally, the implications of heart disease will change for everyone-including your other children and relatives.

Although the diagnosis and treatment of heart disease is difficult for everyone, an open, honest, loving approach can give your family extra advantages in handling future problems of all kinds. When family members help each other with their reactions and feelings to the heart problem, a model is created to use for other problems that occur in life.

Parents

As parents, you are coping with the consequences of the diagnosis of heart disease in your child. Each of you will use different ways and take different amounts of time to adapt. For example, you may react to stress by becoming easily angered, whereas your partner may want to spend time alone. Acknowledging your partner’s distress and respecting your different ways of handling the problem will help you work together. Take time to talk with each other about how you are feeling and how you might help each other. Listings in the Family Developmental Charts outline some possible effects of the diagnosis for you as parents. Also, the section on Family Discussions may help you begin to talk with each other.

The Child with Heart Disease

For a child, having heart disease can cause many uneasy feelings and questions. These issues change as a child matures. They are outlined in the Family Developmental Charts. At each developmental level (i.e. infant, pre-school, school age and adolescence) or when changes in the heart condition/treatment occur, a child’s feelings and questions about his heart disease need to be addressed. You can help by talking with him and/or encouraging him to talk with others. At these times, you can be the most important source of comfort. The hospital staff also is available to you and your child.

Brothers and Sisters

Brothers and sisters have special needs when a part of their life is colored by the diagnosis of heart disease in a sibling. Like you, they may experience strong feelings about the heart problem and the disruption it causes for everyone. Understanding the facts and reacting to them will be different for each of your children because of their ages and personalities. Children, even young ones, are sensitive to what is happening. They are aware of a brother’s or sister’s hospitalization and trips to the clinic. They may overhear parts of conversations that are difficult to understand, causing them to become confused or frightened. Their understanding of the illness and their questions will change as they grow older.

Brothers and sisters need your special help. They may feel responsible for causing the heart problem or confused about things that occur. Some children feel angry that their parents allowed the heart problem to happen. Others resent the extra time parents spend with the sick child. Their perceptions about what is happening may cause worry and stress.

Fostering the ability of your other children to cope with the heart disease is essential. Brothers and sisters are important to one another and, in many cases, have a longer relationship together than with anyone else they ever know. They can support, comfort and help each other through difficult times.

As they grow older, brothers and sisters may want to provide care for a sick sibling. Establishing their own independence will be more difficult if they feel a strong sense of responsibility for their sick brother or sister. The balancing of independence and a sense of responsibility to each other will be even more difficult when the diagnosis is severe.