CaringBridge Staff | 01.06.21
If a child has heart disease, it may be difficult to know the best ways to talk to them or tell them about it. We offer a few gentle tips to help you navigate this scary situation that will hopefully make it easier for both you, and your child.
Choose a Safe Space to Talk
Choosing a space in which your child is comfortable can help set the tone for your conversation. It’s scary, but being in a familiar and safe place, like a child’s bedroom, playroom, or your room, can help set them at ease.
Children pick up a lot of their emotional responses to situations from the people around them. So if you can keep a brave face, it might help them feel braver too. Your own emotional presence can be part of creating this safe space to talk.
Use Honest, Age Appropriate Language
One of the hardest things about talking to your child about their heart condition is knowing how to distill something so complicated into something a young brain can understand. It’s important to be honest with your child, even if you’re tempted to save them the pain of knowing
It can be helpful to make a list of what you think they should know, like important facts about their diagnosis, and key parts of their treatment plan. Your child’s medical team can help you come up with this list and how to discuss it with your child, if you don’t know where to start.
Then, you can look at each item you think they should know, and try to rephrase it in a way that you think your child will understand. You know them best.
A lot of children will have questions, and do your best to make it clear that they can ask those questions, and have room to express their feelings during this conversation.
“My son was very young and I told him he had a heart boo boo just like mommy and pappy! I told him that we would take pictures every year at a special place and in time the doctor might decide that the boo boo needed repaired! He is 22 now. :)”
Love Them Up and Reassure Them
Children will have different worries and reactions to this conversation about heart disease. They might already be worried, especially if they’ve had a number of medical treatments and symptoms already.
Answer the questions they have, but reassure them by answering some of the questions they might not even know how to ask.
Here are a few ways you can reassure a younger child:
- It’s not their fault – they didn’t do, think, or say anything that caused their heart disease.
- Heart disease isn’t contagious, so they can’t get anyone else sick.
- Let them know you’ll be there every step of the way.
- Remind them that the hospital is a safe place that is there to help them feel better.
- Heart disease does not mean they’re dying. They might have heard about heart disease, and assume the worst. Reassure them that all heart disease and all bodies are different.
Your little one might need to hear these words more than once. That’s okay. Keep reminding them they are loved and they are strong.
Older children and teenagers probably know a little about heart disease already. This might mean two things: first, you might have to be ready to correct some misconceptions, and second, they might have more detailed questions.
Walk them through:
- How heart disease might impact their everyday life. Things such as school, activities, and friends.
- If there will be any physical appearance side effects (like scarring).
- What choices they will have during their treatment.
- Who they can ask for questions — you, their doctor, maybe the school nurse. Is there anyone else that is a good resource for them?
No matter how old your child is, remember to love them up a little extra.
“Tell them the truth. Show them they are not alone. Include them in their care. Give them choices.”
Help Your Child Prepare for What’s Next
After you’ve started talking to your child about their heart disease, walk them through the next steps in their treatment plan.
Break it down for them by month, week, or day, depending on the intensity of their treatment. Explain what treatment, medications or procedures they’ll have and how they will help.
They might ask you if this will be painful. You can tell them that doctors and nurses train really hard to make you feel better, and to keep treatment as painless as possible.
You can try role playing or reading stories about their treatment before it happens. If they’re going to have surgery, try getting them a stuffed animal, and pretend doctor’s kit. Show them where the surgery will be, and where they might get an IV or blood drawn, if applicable. Some kids might be more scared of needles than surgery.
Ask Your Support Network for Help
This is a hard conversation for any person, much less a parent. No one is expecting you to do it all by yourself. Reach out to your child’s care team to get the help you need.
Your child’s specialists have experience working with all kinds of children and families and diagnoses, and can help guide you through this time in your family’s life. They also take some of the weight off your shoulders: no one expects you to be perfect right now.
Ways to Help Your Child Cope
This conversation is the beginning of your child’s journey, and your family’s. It will take strength and bravery from all of you. There are some useful ways to help your little one cope, while they battle heart disease.
- Involve the whole family in the new lifestyle. It’s a lot easier to eat healthy and get the exercise they need when the whole family participates. It can help them feel less alone and more supported.
- Help your child maintain relationships with friends and classmates. Your kiddo needs the friendship of their peers now as much as ever. So help them have normal playdates when they can, or set them up with video or phone calls.
- Coach family, teachers, and playmates’ parents on what language to use. Your child’s support system wants to help, so give them the language they need to educate your child’s classmates and friends.
- Give your child the tools to advocate for themselves. Teach your child that they can always ask questions (especially from their doctor) and that it’s okay to stand up for their needs.
- Add little moments of fun to your child’s day. This could be a favorite funny TV show, snuggle time with their parents, a playdate, extra screen time, or a special treat. Find ways to make things a little less scary.
- Connect with other families who have experienced heart disease. Ask your doctor to connect you with a social group in your area.
- Find a counselor to help your child, and the rest of your family, process and work through these unfamiliar situations.
Having conversations with your child about heart disease is one step in the process. We hope these tips can help make this a little easier on all of you.
For more advice on navigating the stress and emotions of your child’s heart disease diagnosis, see our article 10 Tips to Cope With Your Child’s Chronic Illness.