How to navigate conversations about your child’s heart condition

For many parents and caregivers, navigating conversations with their child about his or her heart condition can feel overwhelming. Where to start? When to start?

Advocate Children’s Hospital’s Dr. Joan Hoffman, a pediatric cardiologist, and Dr. Gabrielle Roberts, a child psychologist, offer the following guidance:

Consider the circumstances

Keep in mind that conversations with a child who was born with congenital heart disease will be different than a child who can remember their life before diagnosis. Regardless of when your child was diagnosed, explain to them that their heart is unique and needs special care. Explain that this is not their fault — they did nothing to cause a heart problem. This is an important point to reinforce as they grow.

Keep age in mind

Use age-appropriate language and provide information in a simple and honest manner. Written material or visual aids may be helpful for some children. Although you may have a lot of information you want to share, you do not want to overwhelm your child. You may need to break up the conversation. Start slow and follow your child’s lead.

Validate emotions

Listen to your child and validate their emotions. Ask questions to better understand how they are feeling. Let them know it is completely OK to feel sad, angry, frustrated or worried and that these feelings may come and go over time. Remind them that you are always there to listen and help.

Focus on control

Encourage your child to focus on what they can control. Teaching them that they have a great amount of control over their health and wellbeing is so important, whether they have a heart condition or not. When it comes to their heart health, this includes staying active, eating healthy, following medical guidance, taking medications as prescribed, and brushing and taking care of their teeth.

Problem solve

With lifestyle limitations, validate disappointment and resist the urge to find the ‘silver lining’ while still helping your child to focus on what is available to them. Problem solve to make creative modifications to existing activities when possible. Partner with your child to identify new, safe activities they may enjoy.

Advocate for knowledge

Teach your child to be their own advocate. Ask if there is anything about their condition they don’t understand or want to learn more about. This is especially important before and after checkups, procedures and hospitalizations. If you do not feel properly equipped to explain medical terminology to your child, their health care provider can help share age-appropriate educational resources. Also, child life specialists are often available to help your child prepare for hospitalizations and understand medical procedures.

Find support

Find an outlet to express your feelings and concerns, like friends, family or support groups. Avoid sharing your worries and stress with your child, as this can cause them to feel guilty and anxious. If you feel you are struggling or just want some extra support, consider meeting with a mental health professional. Caregivers need care, too.

Conversations with your child about their heart condition will be ongoing. Different developmental stages bring new social and psychological dynamics. As your child grows, so will their capacity to understand their heart condition and how they can best advocate and care for themselves.

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