CHD Awareness

Febrary 7-14, 2011 is Congenital Heart Disease Awareness Week. I've been blown away by the awareness that alot of my fellow heart mom bloggers have raised. I'm a total slacker, but after seeing all the effort plan to do a whole dedicated week next year. Be prepared!! This year, I will say that if you are pregnant or know someone that's pregnant, insist on getting an echo to make sure that your baby does not have a heart defect. Many defects cannot be detected in a normal ultrasound. When I look back on that day in January 2009, surrounded by people I loved,(thankfully), and the doctors delivered the news, my heart breaks all over again. It is still painful to think about that day. But I shudder to think of how traumatic it would have been if I DIDN'T know and we would have delivered at a hospital that didn't have the surgeons to fix Daniel's heart. Helicopter rides, ambulances, being seperated. I get sad thinking that the twins were across the street from one another after their birth, can I even grasp how sad it would have been to be hours apart??? And yet, so many parents HAVE to do this because that is when they discover that their children have heart defects!! Being prepared is hard, but its such a gift. And spread the word about CHD, please. There is so much more research that can be done and so little being done compared to other diseases. All sick children deserve hope. Lets give our heart babies that hope! Here's my hope, with his big brother. 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.

• Here are some CHD facts: 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."

  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.