Family Discussions

It is not easy to begin talking about problems with other people. That is human nature. When you have a child with a heart problem, it may be difficult to talk about it with him, your other children or your partner. However, once you discuss it, you may feel the problem is easier to handle. Parents have told us talking with others helps them begin to handle their thoughts and feelings about the heart disease.

The following charts give examples of statements to use when you want to begin a discussion. The charts are divided into comments directed toward your partner, your child with heart disease and your other children. They are further divided into comments when talking about (1) the diagnosis, (2) trips to the hospital and (3) day-to-day life. You may need to change the wording to make it appropriate for a child of a particular age.

It is important to have family discussions about the heart diagnosis and its implications at different times over the years. Ongoing discussion is important because your children will have an increased ability to understand the heart problem as they mature. In addition, the diagnosis must be re-explored since its emotional impact on family members changes with time. Our staff is always available to help with these discussions.

Encourage your family, and especially your child with heart disease, to talk about the problem. This will help you feel more comfortable and bring you closer. It also will let everyone know this or any problem can be discussed when they have concerns or questions.

Listed below are several events and comments/questions for each that may help you with your discussions.

Parent to Parent

Diagnosis

• Can we talk about what the doctor said? I’m worried about what this heart problem will mean for us.
• I keep trying to figure out what caused this. Are those questions going through your mind too?
• I’m better now that I’ve cried! This was the worst shock of my life.
• I keep wondering, “How we can manage?”“Will things ever be all right again?”“Can we pay the bills?”“What are you thinking?”
• Are you wondering how this heart problem will change things for us?
• When we talked with the doctor, he said there is a lot of research going on in Cardiology. Do you think this will make things easier for us in the future?

Hospital Visit

• Are you worried about what the doctors might find?
• Going back to the hospital makes me think about the times we’ve been there and how hard those times were. What is it like for you?

Day-to-Day

• Sometimes I feel our lives revolve around this heart problem. Do you have a hard time putting it into perspective too?
• Are you worried we give too many privileges to our son because of his heart problem?
• I’m so worried and upset now that our son is a teenager. He never tells me how he feels or what he is doing. I’m sure he’s going to hurt his heart by trying to do what everybody else does. Are you worried?
• It is so nice, but so hard to see our daughter dating and planning marriage. I worry about her doing all the things she’ll need to do with her new husband and home. But I worry most about the problems pregnancy could bring. Do you think about those things too?

Parent(s) to Child with Heart Disease

Diagnosis

• Do you ever wonder what caused your heart problem?
• Sometimes I think you worry your heart problem is the same as Grandpa’s.
• I think it is important for you to understand your heart problem. It has been a long time since we talked about it. Can you tell me what you remember?
• Do you wonder whether your heart problem will affect the rest of your life?

Hospital Visit

• Are you worried about what the doctor might say when you go to the office today?
• Going back to the hospital makes me think about the other times we have been there. What is it like for you to think about going back?
• I know Aunt Ruth was worried when she had to go to the hospital. I wonder whether you are worried about going too? Sometimes it helps to talk about things.
• I wish you didn’t have to go to the hospital. It makes me feel sad. Does it make you sad too?

Day-to-Day

• Have you ever wondered what your life would be like if you didn’t have your heart problem? How do you think it would be different?
• If you could change anything about your heart problem, what would it be?
• Do you talk with the other kids at school about your heart problem? What do you think they know about it? How could we help them understand more?
• I know having a heart problem must be hard for you, but I don’t know what it is really like. Can you tell me?
• If someone else just found out they have a heart problem like yours, what would you tell them?
• How do you feel about having a heart problem when everybody else’s heart is OK?
• When I was in school, I was fat. Everyone else was skinny. I was always sad and felt left out. I know how hard it is to be different than the other kids. Is it hard for you too?
• Since Grandma died, you’ve seemed sad and upset. Her death has been hard for all of us - but I wonder whether you’re also worried about how long you might live?
• You’ve had a lot of problems with your heart. Do you worry that having sex might cause even more?

Parent(s) to Brothers and Sisters

Diagnosis

• Do you know why your brother has heart disease? I thought we might talk about it so you won’t worry you or somebody else did something to cause it.
• Did you know your brother’s heart problem is different from Grandpa’s? Let me tell you how it is different.
• Are you wondering if your brother’s heart problem will change things for our family?

Hospital Visit

• Sometimes kids feel left out when their parents have to spend so much time at the hospital. I wonder if you ever feel that way?
• I think it is important for you to know what happened at the hospital today with your brother. Let me tell you about it.
• Do you ever worry your brother might be so sick that he won’t get better and come home?

Day-to-Day

• I know our family has to adjust to things because of your brother’s heart problem. Sometimes I feel sad about it. How does it make you feel?
• Sometimes your brother gets special privileges because of his heart problem. Does that ever make you angry?
• Let’s talk about what is wrong with your brother’s heart and how it is different from a normal heart.