A diagnosis of congenital heart disease can be scary and overwhelming, no matter when it happens. But there is hope! Thanks to new and better treatment, chances of surviving and thriving are better with the right care.
At Pediatric Congenital Heart Association, we believe information is important when making decisions about that care. We have shared trusted resources below, to help you understand your CHD and talk with your care team at different times in your journey.
When you are ready, we hope you will review other sections of our website and utilize resources as you manage care over your lifetime. Together we are Conquering CHD!
What is CHD?
Congenital heart disease is a lifelong journey for patients and their families. Read below for multiple definitions of CHD, and key terminology for every CHD patient and family.
Cardiac Development and Anatomy
Understanding how the fetal heart forms is crucial to screening, diagnosis and treatment of congenital heart disease.
Diagnosis and Defects
There are more than 36 kinds of congenital heart defects and people with congenital heart disease often have more than one heart defect. The following resources can help you understand more about your heart disease and/or defect(s).
Centers for Disease Control and Prevention
The CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) is committed to helping individuals with congenital heart defects in each phase of life, through public health tracking, research, and prevention
National Institutes of Health
Explore this Health Topic to learn more about the NIH's role in improving health for congenital heart disease patients
Having the right information when speaking with your care team and making decisions is very important. The empowered and educated patient will likely receive the right care and may experience better longterm outcomes.
Emersynn was born November 2016 and is our miracle baby! She is doing absolutely amazing! At our 20 week anatomy scan, we found out that our little girl has a congenital heart defect (CHD). Shortly after this news, we were referred to a high risk OB and a pediatric cardiologist. When we saw the pediatric...Full Story>