CHD World
Providing Education and Awareness about Congenital Heart Disease (CHD)
In loving memory of
Gwenyth Graham Carpenter ~ March 17, 2010 - May 14, 2010
This website is connected to a shadowbox at the Explore More Discovery Musuem in Harrisonburg, VA. It is dedicated to raising awareness and educating people about congenital heart disease.
Visit The ZIpperstrong Project to read personal stories and see why CHD kids and adults are often rightly referred to as CHD Warriors!
Learn About Congenital Heart Disease
Looking for in-depth CHD Resources? Click Here.
Read below for a brief introduction to CHD:
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During CHD Awareness Week alone (February 7-14) as many as 700 babies are born in the United States with a congenital heart defect (CHD). Some parents learn of the defect during an ultrasound visit; others are unaware of any issue until after the baby is born.
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Most CHDs occur in families with no history or known risk factors. Random genetic mutations, certain health conditions in the mother, lifestyle and environmental factors, as well as medications taken by the mother, are all implicated; however, much more research is needed to better understand the cause of heart defects.
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Some heart defects don’t need treatment right away or can be cared for with less invasive procedures than open-heart surgery. However, about 1 in 4 babies born with a heart defect has what is called a "Critical CHD" (CCHD).
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Children born with CCHDs often need surgery within the first few days of birth. Many may require more than one complex surgery or other procedures over several years.
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Medical care for babies with CHD and CCHDs is improving; however, continued research is still vital - advancements DO save lives, and funding research will bring life-saving advancements sooner for the entire CHD population.
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*Between 1979 and 1993, about 67% of infants with critical CHDs survived to at least one year.
* Between 1994 and 2005, about 83% of infants with critical CHDs survived to at least one year.
* Currently, about 69% of babies born with critical CHDs are expected to survive to at least 18 years of age.
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Even with surgery and other interventions, as CHD Warriors grow into adults, they still need customized care for their heart. An Adult Congenital Heart Disease Specialist is an imperative part of lifelong care for anyone born with a CHD.
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Sometimes a heart transplant is the only option. Over 500 pediatric heart transplants are performed in the US annually, and more than half of those are for patients born with a congenital heart defect. In 2023, UVA Health Children’s Hospital performed 18 pediatric transplants. These patients also require specialized lifelong care - surgery and transplants are not cures.
Sources:
https://blog.uvahealth.com/2024/02/08/chd-awareness-week/
https://www.marchofdimes.org/.../congenital-heart-defects...
https://www.cdc.gov/ncbddd/heartdefects/data.html