Friday, February 01, 2008


Day 1 of my personal CHD adventure in advocacy, and I'm overwhelmed. In the last 48 hours I've received about 40+ emails from parents of CHD children and some of which have lost children to these series of defects. I had planned a nice commentary for my first blog of this month long venture, but can't seem to find it in myself to finish it today. So, I'll keep this simple and share with you some of the facts from the Children's Heart Foundation. I have not had time to verify all the facts they list, but from the research I've done in the last week, most seem to be right on target.
  • CHDs are America’s number one birth defect, affecting nearly one out of every 100 births, or 40,000 babies a year.
  • CHDs are responsible for one third of all birth defect related deaths, making CHD the number one cause of birth defect related deaths.
  • More than 91,000 life years are lost each year in the United States because of CHDs.
  • More than 50 percent of all children born with CHD will require a least one invasive surgery in their lifetime. Twenty percent of these children will not survive past their first year of life!
  • The cost for surgery alone exceeds $2.2 billion a year!
  • CHD research is grossly under funded. Pediatric cancer research is five times higher than CHD research although twice as many children die from CHD each year in the United States than from all forms of childhood cancer combined.
  • Research has already made a difference in the lives of thousands of children and their families. In the last decade, death rates for CHDs have declined by almost 30 percent because of the advances made through research. As more children's heart abnormalities are treated, research is needed to meet the needs of CHD patients as they reach adulthood.
There, the facts are laid out. Next up... coping with a tantrum thrower, ways that CHD has changed my perspective on life and what you can do to make a difference for a child or family facing CHD.

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