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
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.
