Transitioning to Adulthood
Life with CHD Beyond Childhood
Transitioning from pediatric to adult care is a significant step for both young people with congenital heart disease (CHD) and their parents. This new chapter often brings a mix of emotions – excitement, anxiety, hope, and uncertainty – and that’s completely normal. At Heart Beats, we understand the emotional and practical challenges of transitioning to adulthood with CHD because many of us are heart families too. Our role isn’t to give medical care, instead it is to connect you with trusted resources and compassionate peers.
A New Chapter for Young Heart Warriors
For teens and young adults with CHD, taking the leap into adult care can feel empowering and a bit daunting at the same time. You’ve grown up with your parents and pediatric team guiding your health. Now, as you gain independence in other parts of life (school, work, friends), you’ll also learn to take charge of your own health care. This doesn’t mean you’re on your own – your pediatric cardiology team will help make the transition smooth, and your family is still by your side. It’s okay to have questions or worries. Many young people wonder: Will my new doctors understand me? How will I manage appointments or medications on my own? These feelings are all part of the transition, and with preparation you will build the confidence to manage your heart health. Remember, transitioning to adult care is about becoming your own best advocate while still having a support network behind you.
Guidance for Parents and Caregivers
For parents, watching your child step into adulthood with a heart condition can be emotional. It’s normal to feel pride in how far they’ve come, and also some worry about “letting go.” In fact, transitioning can be scary for parents because it’s a change in your role – but knowing what to expect can help you support your child. During this time, your teen will start taking on more responsibility in managing their care, like speaking up at doctor’s appointments or remembering medications. You remain an important part of the team, offering encouragement and guidance as they learn the ropes. Many parents find comfort in connecting with others who have been through this phase. Heart Beats can connect you with peer support, so you can hear from fellow parents about how they handled things like the first solo specialist visit or moving to an adult hospital. You are not alone, and sharing experiences can make this transition less overwhelming.
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.
-
Helps youth, young adults, their parents/caregivers, and health care providers transition to adult healthcare.
-
The national network providing information for adults living with CHD across . You can find details about adult CHD clinics (there are 16 across Canada) and learn what lifelong care looks like.
Recommended Books & Publications
Sometimes a good book or personal story can provide insight and comfort during the transition years. Here are a few book recommendations that other CHD families have found helpful.
Always use them alongside advice from your care team.
Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease
Full of evidence-based, easy to understand information about CHD, Healing Hearts and Minds offers strategies for learning to thrive despite living with this condition, but most importantly it will offer hope and connection.
Your Hearts, Your Scars
A deeply personal and moving collection of essays by Adina Talve-Goodman, who was born with a congenital heart condition and received a heart transplant at nineteen. With humor, honesty, and emotional insight, she shares her journey of growing up, navigating chronic illness, and discovering identity beyond diagnosis. This non-clinical, story-driven book offers comfort and inspiration for young adults living with CHD and the families who walk beside them.
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.
