Patient/Parent Resources

Download the Fetal Heart Society Guide for Parents:

There are a number of organizations – both national and local – dedicated to congenital heart disease. They are great resources for learning more about congenital heart disease, networking with other affected families, and joining in advocacy efforts. Below are a list of organizations the Fetal Heart Society supports.

CHD Care Compass
Medical professionals, parents, and care advocates partnered to create the CHD Care Compass for families of the nearly 1% of babies born with congenital heart disease in the U.S. annually. We can help you navigate every step of the CHD care journey, from diagnosis to life at home after surgery.

Overview of Fetal Echocardiography

This includes an overview of CHD, what a fetal echocardiogram is, and who should get one

Link to Specific Congenital Cardiac Lesions

Links to normal cardiac anatomy and physiology, as well as to 17 of the most common forms of CHD

Mended Little Hearts

A peer support group promoting education and advocacy for families affected by CHD

American Academy of Pediatrics – Congenital Heart Public Health Consortium

Video Series of Q&A regarding common topics in Congenital Heart Disease

Centers for Disease Control and Prevention

Fact Sheets with Color Diagrams of many forms of congenital heart disease

National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC)

A collaborative of clinicians, researchers, and parents using quality improvement tools to improve outcomes for HLHS and other complex forms of congenital heart disease.

Congenital Heart Surgery Database – Public Reporting

The Society of Thoracic Surgeons hosts a Congenital Heart Surgery Database to which Congenital Heart Centers can publicly report their outcomes.

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