Facts of CHD's
Incidence, Morbidity & Mortality
- Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD - HLHS is one of the rarest and complicated heart defects out there
- 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...sadly many defects are still going undetected during pregnancy and these unassuming parents take home what they think is a healthy baby only to have a crisis in the first few days of life that many times leads to death
- 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
- Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities- this can be from poor oxygen throughout their bodys from their compromised circulation or a result of numerous surgeries, bypass and/or brain bleeds
- 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 - LOVE THIS!
- 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood
- 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
- More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime - Olivia is 10 months old and has had two open heart surgeries and one heart catherization, she needs at least one more surgery and will require catherizations throughout her life for diagnostic purposes
- 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
- The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research
- The Children’s Heart Foundation has directed $3.9 million to 41 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada
- CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book
- CHF has established eight Chapters and has volunteers in many US states
- 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 underappreciated global health problem
- In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research
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