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Talking to Your Care Team
It is hard to learn that you or your child has a heart defect. But, there is hope! Thanks to new and better treatment, chance of surviving is better, with the right care. At the Pediatric Congenital Heart Association (PCHA), we believe that information is important when making decisions about the care of your child. For this reason, we have shared resources to help you talk with your came team, at different points of your care.
About Heart Defects
There are more than 36 kinds of heart defects. People with congenital heart disease often have more than one heart defect. These resources can help you understand more about heart defects.
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 congenital heart defects, the NIH's role in research and clinical trials to improve health, and where to find more information.
Congenital Heart Public Health Consortium
Excellent fact sheet about congenital heart disease with cited sources.
Heart Encyclopedia - Includes Video Models
Experts at Cincinnati Children's developed the Heart Encyclopedia to provide information about cardiac diseases, defects, disorders, and problems that may affect a child's heart. The Heart Encyclopedia also provides information about options available to diagnose and treat children's heart conditions and anomalies.
American Academy of Pediatrics
Descriptions of the most common types of birth defects.
American College of Cardiology
Includes a clinic directory and additional CHD resources.
American Heart Association
Information about the most common types of heart defects.
“PCHA means that I have someone fighting to make sure I have access to information that I can understand and for legislation that impacts my future health.” – TrinityFull Story>