CHD Parent Resources


Our Resources for CHD Parents

Created by Tom & Kat Hansen

Our Book "Hope and Courage: Six Life Lessons from the Parents of a Child with Congenital Heart Disease"

CHD Parent Profile Assessment

What to Bring to the Hospital for After Your CHD Baby is Born

Top Ten Tips

for

CHD Parents

Questions to Ask Your CHD Child's Cardiologist

Emergency

Card

Template

Medical

Finances

Organizational

Aid

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.

More resources we love to help you on your CHD journey!

Below you will find a list of non-profits, programs, websites, books, and other products & tools we recommend for CHD parents. Click the titles to be taken to the websites!

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.

  • Abridge - Provides a way for patients and patient families to capture the details and summarize medical conversations using their phone.

Books

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.

Non-Profits

  • 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.


Online Shops

  • Theheartcommunitycollection.com - 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.

  • Heartlikeamother.com - 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!

  • Happyheartmama.com - Helping heart mom's feel empowered, find joy, and support wherever they are in their journey.

  • StudioOneFourTwo on Etsy - Custom CHD illustrations, stickers, keychains, and more!

Organization

Products