Caring for the Family

Since your child was diagnosed, your lives have changed. A pediatric heart transplant brings changes to your home life, including new stresses. Every family is unique. Your family may feel fear, anger, depression and guilt. By sharing these feelings, you may find it easier to cope with change. Your child’s healthcare team is here to listen to your concerns and help you in any way that they can.

Tips For Families

Fear
The time of diagnosis is often the hardest. Fear of the unknown may be overwhelming. This may be the first time your child has been in the hospital. This can be stressful to you and your child. You may also have fears about treatment, costs or how to help your child cope with a heart transplant. Talk about these fears and get them out in the open.

Anger
You may feel very angry. Feeling angry is a normal reaction. Find a way to express your anger. Take a walk or talk with someone.

Guilt
Parents may feel guilty because they did not know their child was sick. Families have said they wonder if they caused their child’s heart failure. Other family members may feel guilty that they are healthy. Young children often believe they have “magical thinking” and may feel that they caused the illness. Let your family know they did not cause your child’s heart failure.

Depression or Grief
Depression is used to describe a range of emotions and behaviors. Feeling sad is a normal reaction, which may cause changes in family routine and feelings of being alone. Change can cause grief and depression. Common symptoms are:

  • Crying spells
  • Decreased or increased eating
  • Lack of interest
  • Decreased energy
  • Tightness in the chest
  • Headaches

All these feelings are common human emotions. You are not alone. With the support of family, friends and your child’s healthcare team, most families are able to work through these emotions. They are able to regain coping skills needed to meet care demands.

Suggestions to help cope with your child’s illness:

  • Find a private time to talk with your spouse or a close friend. Try not to talk only about your sick child.
  • Avoid talking about your child in his presence, unless he is included.
  • Find ways to reduce stress. You know what works best for you. Ideas include exercising or reading.
  • Take turns with your spouse or another person who can stay with your child in the hospital or go to heart transplant clinic visits. This helps everyone be involved with your child’s treatment. It also reduces the gap that may grow between parents when one is more involved in treatment than the other.
  • Ask a member of your child’s healthcare team for help and support.
  • Talk with other parents of children with heart transplants.
  • Talk with your spiritual leader.
  • Attend a support group for heart transplant patient families.

Sometimes emotions become so overwhelming that it can be hard to regain balance. This is very true when there were stresses before diagnosis. If there have been other family strains or losses, mental health problems or substance abuse, counseling and medicine may be needed. Discuss your feelings with the healthcare team to get the help that you need.