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Hope and Courage: Six Life Lessons from the Parents of a Child with Congenital Heart Disease
Our Resources for CHD Parents
Created by Tom & Kat Hansen
Did You Know? Congenital Heart Disease is the most common birth defect worldwide. 1 in every 100 children are born with CHD every year in the United States alone. To give some perspective on just how common this disease is, other childhood birth defects and diseases such as Down Syndrome affect 1 in 800, Cystic Fibrosis affects 1 in 3,000, and cancer affects 1 in 6,250 children. According to the CDC, there are an estimated 40,000 children born with CHD every year in the United States.
Our Book "Hope and Courage: Six Life Lessons from the Parents of a Child with Congenital Heart Disease"
Our Book "Hope and Courage: Six Life Lessons from the Parents of a Child with Congenital Heart Disease"
More Valuable Resources Below!
More Valuable Resources Below!
Below you will find a list of links to non-profits, programs, websites, books, and other products & tools we recommend for CHD parents.
Article
Apps
Heartpedia - Educates families on heart anatomy with 3D images showing anatomically accurate images of congenital heart defects and repairs for those defects. It's THE PERFECT TOOL for educating yourself as a CHD parent, and aids you in describing your child's CHD to others.
Books
Healing Hearts & Minds: A Wholistic Approach to Coping Well with Congenital Heart Disease
Emotional Recovery from Congenital Heart Disease by Richard Schwindt MSW, RSW
Find more amazing CHD books HERE on The Heart Community Collection website!
Magazine
Newsletter
Podcasts & Radio Shows
Movies
Building the Field: Lifelong Care for Congenital Heart Disease - This riveting documentary on YouTube explores the unresolved complexities of lifelong health care and mental health issues for children and adults living with congenital heart disease. In our opinion, it's a must-watch for every CHD Parent.
Something The Lord Made - This movie starring Alan Rickman, Mos Def, and Mary Stuart Masterson tells the true story of heart surgeon Alfred Blalock and lab technician supervisor Vivien Thomas who worked together to revolutionize modern heart surgery.
Silent Cries: Breaking Through CHD Awareness - With over forty types of congenital heart defects (CHD), this documentary focuses on children and adult CHD warriors and how they have inspired others never to give up. Many CHDs go undetected until later in adult life.
The Heart of the Matter - The first comprehensive documentary on Congenital Heart Defects (CHD) ever produced for television. Written and produced by TMK Productions, Inc., in collaboration with The Children's Heart Foundation, the program examines all aspects of CHD: The #1 birth defect in the world.
Non-Profits for CHD Fammily Support
Children's Heart Foundation - Helps to meet the emotional, financial, and practical needs of CHD families.
Sisters By Heart - Supports parents of single ventricle CHD children and partner organization with the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC).
Mended Hearts - A national peer-support program for CHD patients and their families/caregivers.
James Doss Memorial Foundation - Raises funds that help CHD families, whether that help comes in the form of toys or meals while a child is inpatient all the way to helping with the burden of funeral costs should an untimely death occur to a family's Heart Warrior.
Callie's Giving Heart Foundation - Through established partnerships, Callie’s Giving Heart collaborates with healthcare professionals to recognize in-need families through a grant application process. Grants are awarded to help families cover needed items or expenses during hospital stays. A few examples include groceries, gasoline, meals, travel expenses, and daily essentials. They believe healing happens when families are together and this support is meant to help keep families close during hospital stays.
CHD Books/Gifts/Gear
The Heart Community Collection - The Heart Community Collection is a collective of CHD authors and creatives who have joined forces to bring resources to the CHD Community. You will find a wide variety of reading materials, from children's books to memoirs and educational books to cookbooks on healthy living.
Studio 142 on Etsy - Custom CHD illustrations, stickers, keychains, and more!
Heart Like a Mother - Special gifts for you, a friend, or your favorite heart warrior. Treat yourself while treating others: your purchase gives back to heart families in need!
CHD Research Organizations
National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) - A network of over 60 pediatric cardiology care centers across the US, Canada, and the UK who work together with families, clinicians, researchers, and patients to dramatically improve the outcomes for children with cardiovascular disease.
Conquering CHD - A organization who exists to conquer the most common birth defect (CHD). They engage, listen, learn, and act. They create visibility and empower all impacted by CHD. They accomplish this through awareness, knowledge, community, and research.
Helpful CHD Gear
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