Congenital Heart Defect Awarness Week February 7-14

It's pretty sad when your child has a congenital heart defect (CHD) and you don't even know when CHD Awareness Week is!!  I saw this on someone's Facebook status this morning and about freaked out that I didn't know anything about it!  I guess it makes sense that it's close to Valentine's Day.  So here's a quick post about it! 

You can click on the Facebook thing below and it should take you to the CHD Awareness Week 2011 page if you want to "like" it. 

Below is a "fact sheet" and info about CHD I took from the Congenital Heart Information Network website (http://www.tchin.org/). 

Congenital Heart Defect Fact Sheet

• Sometime during early pregnancy, a baby's heart may not form properly, resulting in structural abnormalities known as Congenital Heart Defects. In many cases the cause is unknown.
• It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year.
• Although some babies will be diagnosed at birth, newborns are not routinely screened for CHD. The consequences of a late diagnosis can have serious, lifelong implications.**
• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths. Nearly 1,800 infants with CHD die each year as a result of congenital heart defects
• Some CHDs may require visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
• The majority of patients born with congenital heart defects are now adults****, yet many adults with CHD are not receiving adequate ongoing care from trained specialists.**

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.
It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.


If anyone knows how I can get something out about this in a better way, please let me know.  I will be more prepared for next year!  The website has different PSAs, proclamation requests for states to declare this week as CHD Week, and things that I can use, I just don't know where to start.  I will try to post more later if I find out anything else!!!!! 

Love,

The Scott Family