February is CHD Awareness month. My daughter, Nicole, was born with a congenital heart defect but we didn't know it until she was 15 years old. CHD awareness week is Feb. 7th - 14th and I will write more about Nicole's story regarding her CHD at this time but in the mean time here are some facts regarding CHD's:
•Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
•Congenital heart defects are the #1 cause of birth defect related deaths.
•Congenital heart defects are the leading cause of all infant deaths in the United States.
•Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
•Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
Lifelong Disease
•Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
•There are an estimated 2,000,000 CHD survivors in the United States.
•For the first time, more than 50% of the CHD survivors are adults.
•10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.
Economic Factors
•91,000 life years are lost each year in this country due to congenital heart defects.
•The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
General CHD FACTS
•More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
•There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
•In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Research Allocations & Impact
•Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
•Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
•The NHLBI has stated that Congenital Heart Defects are a serious and under appreciated global health problem.
•In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
My daughter now 34, was born with CHD and had her first surgery when she was 18 days old. We are so thankful that we were in a large city where the skills were available to save her life, but more still needs to be done.
ReplyDelete