Congenital heart defects (CHDs) are the most common birth defect.
1 in 110 children are born with a CHD
CHDs affect nearly 40,000 births yearly
The most common CHD is a ventricular septal defect (VSD)
25% of CHDs are critical and will require an intervention in the first year of life
95% of babies born with non-critical CHDs are expected to survive into adulthood
CHDs are the leading cause of birth defect related illness and death
The cause of CHDs is mostly unknown with only 15% of CHDs associated with genetic conditions
Children with CHDs are 50% more likely to need special education services compared to those without birth defects
Fewer than 10% of adults with CHDs are receiving the recommended care
CHDs have no cure and require lifelong specialized care
Have A New CHD Diagnosis?
Start here with some basic information to get you through your first procedures.
Types of CHD
American Heart Association has compiled images and information for many of the myriad heart defects.
Guided Questions
It can be difficult to know what to ask your medical team when you get a new diagnosis. The folks at Conquering CHD have put together some questions to help you make certain you cover the important issues.
Terms to Know
Are you about to go through your first surgery? You may want to print off this glossary of terms that Conquering CHD (formerly known as Pediatric Congenital Heart Association) has put together to help you keep track of medical terminology.
Emergency Plan
Follow this link to a FREE printable form T.O.U.C.H. has created for your use. An Emergency Plan is important to have in place for your heart patient. Keep information about your defect, medications, doctors and past procedures at your fingertips. Don't forget to update it when information changes.
Recommended Resources
Please enjoy these books and other media recommended by T.O.U.C.H. members for your benefit.
Disclaimer
This website in no way replaces the medical advice of your doctor. Our intention is to provide emotional support, as well as information, to help you make informed decisions. All questions about your care should be directed to your health care team.