FHS Guide for Parents
Supporting Your Heart Journey: A Guide for Families
National and Local Organizations
There are a number of organizations dedicated to congenital heart disease. These organizations are great resources for learning more about congenital heart disease, networking with other affected families, and joining in advocacy efforts. Below is 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.
American Heart Association
Overview of Fetal Echocardiography – This page includes an overview of CHD, what a fetal echocardiogram is, and who should get one
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
“In 2009, various organizations across federal, state, and local communities came together to form a consortium that utilizes a public health approach to positively impact the health of individuals affected by congenital heart defects (CHDs). To this end, organizational members representing the voices of providers, patients, families, clinicians and researchers joined to form the Congenital Heart Public Health Consortium (CHPHC).”
Q&A Video Series regarding common topics in Congenital Heart Disease
Centers for Disease Control and Prevention – Congenital Heart Defects
Fact Sheets with Color Diagrams of many forms of congenital heart disease
Single Ventricle Outcomes Network (SV-ONE)
SV-ONE is a collaborative of clinicians, researchers, and parents using quality improvement tools to improve outcomes for HLHS and other complex forms of congenital heart disease across the lifespan. SV-ONE represents an evolution of two previous learning networks, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) and Fontan Outcomes Network (FON).
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.