Family Discussions About a Child's Heart Disease

It's not easy to talk about problems with other people. It's human nature.

And when your child has heart problems, it may be hard to talk about it with them or other family members. But, once you discuss it, you may feel it's easier to handle.

At the Heart Institute at UPMC Children's Hospital of Pittsburgh, parents tell us talking with others helps. It lets them process and start to handle their thoughts and feelings about their child's heart disease.

Contact the Heart Institute at UPMC Children's

For the Heart Institute at UPMC Children's Hospital of Pittsburgh, call 412-692-5540.

Or if you don't live close to Pittsburgh, find UPMC Children's heart care near you.

Helping You Start the Conversation About Your Child's Heart Disease

Below, we offer ways to help jump-start a discussion with your:

• Spouse or partner.
• Child with heart disease.
• Other children.

Under each, we provide sample statements when talking about:

• Your child's diagnosis.
• Trips to the hospital.
• Day-to-day life.

You may need to change the wording to tailor it to a child's age.

It's important to have family talks about your child's heart problem and its impact at different times over the years. Ongoing discussion is vital to help your children increase their knowledge and better understand the heart problem as they mature.

And, since the emotional impact of the diagnosis changes with time, you must re-explore it with family members.

Our staff is always happy 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 at ease and bring you closer.

It also will let everyone know they can talk to you about any problem when they have concerns or questions.

Listed below are events and comments or questions for each that may help you talk about your child's heart disease.

Parent to Parent

Your child's heart disease 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 thinking about how this heart problem will change things for us?
• The doctor said there's a lot of research going on in children's heart disease. Do you think this will make things easier for us in the future?

Hospital visits

• 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 child because of their heart problem?
• I'm so worried and upset now that our child is a teenager. They never tell me how they feel or what they're doing. I'm scared they will hurt their heart by trying to do what everybody else does. Are you worried?
• It's 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 problems pregnancy could bring. Do you think about those things too?

Parent(s) to Child with Heart Disease

Talking to your child about their diagnosis

• Do you ever wonder what caused your heart problem?
• Sometimes I think you worry about your heart problem as much as Grandpa.
• I think it's important for you to understand your heart problem. It's 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 your appointment today?
• Going back to the hospital makes me think about the other times we've been there. What's it like for you to think about going back?
• I know Aunt Ruth felt worried when she had to go to the hospital. I wonder if you worry 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's really like. Can you tell me?
• If someone else just found out they had 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 if 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

Talking to siblings about your child's heart disease diagnosis

• Do you know why your sister has heart disease? I thought we might talk about it, so you won't worry you or someone else did something to cause it.
• Did you know your brother's heart problem is different from Grandpa's? Let me tell you how.
• Are you wondering if your sister'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's good for you to know what happened at the hospital today with your brother. Let me tell you about it.
• Do you ever worry your sister might be so sick that she 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 sister gets special privileges because of her heart problem. Does that ever make you angry?
• Let's talk about what's wrong with your brother's heart and how it's different from a healthy heart.