Living with CHD
Understanding Life with Congenital Heart Disease (CHD)
Living with congenital heart disease affects the whole family, not just the child diagnosed. As a parent, you may find yourself balancing medical appointments, emotional ups and downs, and the desire to give your child a normal, joyful life while learning how to care for their unique heart needs. At Heart Beats, we don’t provide medical care ourselves, however, we’re here to connect families like yours with expert clinicians, reliable information, and a caring community that truly understands what you’re going through.
Congenital heart disease (CHD) is a heart condition present at birth. The good news is that thanks to incredible medical advances, 9 out of 10 children with CHD now live into adulthood, and many go on to lead full, active lives.
CHD is a lifelong journey that can look different at every stage. Some children may spend time in the hospital or miss school, while teens learn to take charge of their care and build healthy habits. As they grow, adults often work to balance careers, relationships, and family planning. Alongside these physical challenges, the emotional side can be just as difficult, and it’s completely normal to feel worried or uncertain after a diagnosis. Talking openly with family, friends, mental health professionals, or peer support groups can help lighten the load and remind you that you’re never alone. Many families also discover incredible strength, resilience, and hope along the way.
Trusted Online Resources
Finding trustworthy information online can be challenging. The resources we recommend are by Alberta health professionals and reputable Canadian organizations. They are not substitutes for medical advice but can help you understand congenital heart disease and connect with support networks.
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An article highlighting learning to live with congenital heart disease.
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A resource page dedicated to articles about living life with CHD.
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This YouTube channel, created by experts at the University of Calgary with support from parents and Heart Beats, offers educational videos on the connection between the heart, brain, and neurodevelopment—empowering parents to advocate for their heart warriors.
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An activity book for kids aged 6–12 living with a life-limiting illness. Through colourful pages and engaging activities, it helps children explore their thoughts, feelings, and questions while supporting meaningful conversations with parents and healthcare providers.
Recommended Books & Publications
Heart Beats encourages families to explore books written for parents of children with congenital heart disease. These resources can help you and your child understand your child’s condition and connect with support networks.
Always use them alongside advice from your care team.
The Abilities in Me: Congenital Heart Defect
A picture book for young children with CHD, focusing on daily life and promoting kindness.
Raising a Heart Child: A Parent's Guide to Congenital Heart Defects
A field guide for parents and grandparents of children facing congenital heart defects (CHD), this book chronicles the real-life experiences of my own heart child.
Zip-Line
It aims to set a model for kids with a CHD to be comfortable with themselves, their heart scar, and the surgery that they were too young to remember.
When Your World Stops: Finding Hope In Your Child's Medical Journey
Author Jennifer Siran shares honest, experience-based stories about navigating a child’s chronic illness—covering everything from hospital life and postpartum struggles to self-care, communication, and staying grounded through reflection. You don’t have to do this alone.
Please Note: Heart Beats is not affiliated with Amazon or any other retailer and does not receive commissions from book sales; we include links solely to help families access useful resources.
Need help finding more information?
Heart Beats is here to answer your questions, share trusted resources, and offer a compassionate ear. Reach out today, and we’ll help you navigate every step.
