CHD has a huge range in severity- sometimes it is extremely mild that there are noticible symptoms. Some heart defects are simply murmurs which "correct" themselves without medical intervention. However, in some cases, it's incredibly severe and the baby will become extremely sick soon after birth. And in other cases, symptoms of CHD may not appear until later in childhood. The most severe and complicated heart defects often require multiple surgeries, a life long list of medications and frequent and lifelong checkups with a cardiologist. If medical interventions fail or the CHD is too complicated or severe, sometimes the only option left is a heart transplant.
If you are the parent of a baby or child who has just received a Congenital Heart Defect (CHD) diagnosis, below are some links to help you find the support you may need.
Babycenter Online Community Forum for CHD - real life parents who are in the midst of living with children with CHD
Cincinnati Children's Hospital Website - Great information about specific heart defects and medical terminology: includes diagrams and videos to help someone (with no medical knowledge) understand the heart and how it functions
Hope for Bravehearts - Resources, support, and information
Sisters By Heart - Resources, support, and information (these ladies were my greatest support through the pregnancy, life, and death of Joshua)
Palmetto Hearts- Community and Information for those seeking support
Below are a list of other families that I have connected with who are walking the Congenital Heart Defect journey. These families are an amazing support to me, and their lives are truly inspiring. Feel free to click their buttons below to go to their sites. (If you would like me to add your button or your page, please email me at firstname.lastname@example.org)! I would love to add you!
Also, feel free to grab my button and post it on your blog!