Congenital Heart Defects Awareness Week: February 7 - 14, 2011

Did anyone see the cute Super Bowl Volkswagen ad with the little boy behind the Darth Vader mask?  Six-year-old Max Page suffers from a serious congenital heart defect (CHD) known as Tetralogy of Fallot.  He had his first surgery at three months old and then had a pacemaker implanted soon after.


In just the past month, two friends of mine have had their precious little babies diagnosed with congenital heart defects.  


Just yesterday James and I read yet another article in the newspaper about an Oregon student athlete who died suddenly during a wrestling match due to an undiagnosed congenital heart defect.  


Today begins CHD Awareness Week, an annual awareness effort to help educate the public about congenital heart defects.  


I want to take a moment to share some important facts:

• Congenital heart defects are the #1 birth defect and the #1 cause of birth defect related deaths.

• At least 9 out of every 1,000 infants born each year have a congenital heart defect. That’s almost 1 out of every 100 infants. 

• Sometimes the defect is so mild that there are no outward symptoms. In other cases, it’s so severe that the newborn becomes ill soon after birth. In still other cases, signs and symptoms occur only in later childhood or early adulthood.

• In the United States, about 36,000 children are born with a heart defect each year. Most of these children can be helped by surgery even if the defect is severe.  

• 1.3 million Americans alive today have some form of congenital heart defect.  About one-half of those are under age 25. 

         (American Heart Association 2010)

• Despite the fact that CHDs affect so many families in the US, a relatively small amount of funding is currently available for patient educational services, research, and support.

It never occurred to James and me that our baby could be born with a heart defect.  But we were that 1%.  I had never heard of the term CHD before.  Now I know it all too well.  Thankfully Levi's critical aortic stenosis was found on day two of life and he could receive the emergency care he needed to live.  I'm beyond thankful that doctors did the extra testing on him to figure out what was causing his murmur, instead of being sent home thinking it was just an innocent murmur that was "nothing to worry about."  

We hope that greater public awareness will result in improved early diagnosis, more support and resources for CHD families, and additional funding for scientific research resulting in new and improved treatment options.

  

Levi's first ride in the backpack