General Information About Congenital Heart Disease and Surgery

About Kids Health
This website has comprehensive information on types of congenital heart defects, types of procedures, and surgeries. It was developed by SickKids in Toronto in partnership with BC Children’s Hospital and other children’s hospitals.

BC Children’s Hospital: Children’s Heart Centre
An overview of heart surgery at BC Children’s Hospital.

Heart and Soul: A Guide to Congenital Heart Disease
This guide was published by the Heart and Stroke Foundation and has extensive information on congenital heart defects.

Knowing But Not Knowing
A guide for parents that find out their baby has heart disease while they’re pregnant.

Resources for Children and Teens

Breathr App by the BC Children’s Kelty Mental Health Resource Centre
The Health Literacy team at BC Children’s Hospital, along with a number of different experts and youth, developed Breathr, a new app to help introduce the concept of mindfulness and create an easy access point for those who are new to the practice.

British Heart Foundation, Teen Heart
This British website has extensive information specifically for teenagers.

Children and Youth Grief Network
Connecting individuals and organizations who provide services and resources that benefit children and youth who are grieving.

This European website has an extensive collection of articles for teenagers.

Finding Resources to Support Child, Youth, and Family Mental Health: ADHD, Anxiety, and Depression [PDF] | [PowerPoint]
Presentation to the Children’s Heart Network on February 28, 2019, by Bryn Askwith, MSc,  Program Manager at the BC Children’s Kelty Mental Health Resource Centre.

A fabulous website focused on helping young adults make the move to adult care.

Kelty Mental Health Resource Centre
The BC Children’s Kelty Mental Health Resource Centre has launched a new website so families and health professionals can more easily find mental health and substance use information and resources to support children and youth. The website contains information, tools, and services, including evidence-based supports, created by trusted health experts at BC Children’s Hospital.

MindShift App by Anxiety Canada
MindShift is an app designed to help teens and young adults cope with anxiety.

A provincial initiative to help youth, young adults, families, and health care providers in British Columbia work together to ensure a smooth, safe, continuous, developmentally appropriate transition from pediatric to adult health care serves. Their tool kit section has many tips for teenagers on how to prepare to take charge on their own health care.

Subtitles: Orientation to the BC Children’s Kelty Mental Health Resource Centre
This orientation experience video will help you determine what to expect when beginning your journey at the BC Children’s Kelty Mental Health Resource Centre.

Canadian Heart Organizations and Programs

Canadian Adult Congenital Heart Network
The CACH Network was created to pool the knowledge and experience of congenital heart disease professionals in Canada to help strengthen their skills and knowledge of the discipline, and to create a community of individuals committed to caring for adults with congenital heart disease—and their families.

Canadian Congenital Heart Alliance
This national organization has extensive information and resources on congenital heart defects in adults. They also have links to many cardiology research articles.

Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation
Resources and support for patients and families living with inherited heart rhythm conditions and for those having lost a loved one suddenly.

Western Canadian Children’s Heart Network
The WCCHN coordinates and integrates care for pediatric cardiac patients across the western Canadian provinces. Their website has good information and resources.

Provincial Heart Organizations

BC Inherited Arrhythmia Program (British Columbia)
A provincial heart program that provides state-of-the-art care to British Columbians with a history of an inherited arrhythmia (or inherited heart rhythm condition), an unexplained sudden cardiac arrest, or a family history of sudden unexpected death.

Braveheart Support Society (Atlantic Canada)

Cardiac Kids in Support of SickKids Foundation (Toronto, Ontario)

Children’s Heart Society (Edmonton, Alberta)

Circle of Hearts Family Support Network (Manitoba, Nunavut, parts of northwest Ontario, and eastern Saskatchewan)

Heart Beats Children’s Society of Calgary (Calgary, Alberta)

Heart Defects Society of Windsor and Essex (Ontario)

Little Hearts Family Group Inc. (Saskatchewan)

American and International Organizations

Adult Congenital Heart Association (American)
This American organization has many resources about CHDs, research, and advocacy for the adult congenital heart community.

Children’s Heart Foundation (American)
This foundation provides funding for congenital heart disease research. They have many resources on their website.

Congenital Heart Information Network (American)
An American national organization that provides information, advocacy, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, and adults with congenital heart defects.

Corience (European)
This European website for families, patients, and doctors, provides in depth information about congenital heart defects including diagnosis and treatment, and research. They have very good articles for and parents, teenagers, and adults.

Kids with Heart National Association for Children’s Heart Disorders (American)
This site has an extensive list of books and links to the latest research.

Mended Little Hearts (American)
Mended Little Hearts is an American support program for parents of children with congenital heart defects and heart disease. Their website has many helpful resources and webinars.

Pediatric Heart Network (American)
Pediatric Heart Network site lists some specialized heart websites.

Social Supports

Government of Canada disability benefits
Includes disability pensions and children’s benefits, savings plans, and a gasoline tax refund program.

Disability Alliance BC
Since 1977, Disability Alliance BC has been a provincial, cross-disability voice in British Columbia. Its mission is to support people, with all disabilities, to live with dignity and independence and as equal and full participants in the community. Disability Alliance BC champions issues impacting the lives of people with disabilities through its direct services, community partnerships, advocacy, research, and publications.

Jobs, education, and career information.

Family Caregivers of British Columbia
Family Caregivers of British Columbia is a registered non-profit dedicated 100% to supporting family caregivers.

Books on CHD

Born with a Broken Heart: Congenital Heart Disease by Rick Gallegos and Annette Gallegos

Zip-Line by David Humpherys