Hope & Courage FREE CHD Parent Resources

We are proud to offer a range of FREE CHD Parent resources created to provide valuable support, guidance, and information for navigating the challenges associated with the CHD journey. From practical tips to emotional support, our resources are designed to empower parents and caregivers, ensuring they have the knowledge and tools needed to advocate for their child's health and well-being.

CHD Parent Profile Assessment

A personality test for CHD Parents & Caregivers to help with communication, understanding, and introspection.

What to Bring to the Hospital for After Your CHD Baby’s Birth

A packing list of everything you will need for your CHD baby, and yourself, for the upcoming birth and initial hospital stay.

Top Ten Tips for CHD Parents

Our best practices for CHD Parents to make the best of their CHD journey.

Emergency Card Template

A fill in the blank emergency card for your heart warrior’s medical information that you can give to babysitters, teachers, and other caregivers.

Medical Finances Organizational Aid

Organize your medical bills in this spreadsheet to make it easier for you to manage your finances

Top Questions to Ask Your Child’s Cardiologist

A list of great questions to ask your heart warrior’s cardiologist at an appointment.

What to Look for in a Pediatric Cardiac Surgeon

A list a great qualities you want to look for when considering which pediatric cardiac surgeon is right for your child.

Coping Tips for Adults with CHD

A resource we co-created with heart warrior Faith Brackett that gives six great coping strategies for adults with congenital heart disease.

Coping Tips for Children with CHD

A resource we co-created with heart warrior Faith Brackett that gives six great coping strategies for children with congenital heart disease.

More Valuable Resources !

Below you will find a collection of links to CHD-related non-profits, programs, products, and more that we recommend for CHD parents.

Articles

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

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 - An 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