Congenital Heart Defect Awareness Day

Nearly three years ago, a friend gave birth to a little girl with Tetralogy of Fallot (TOF). TOF is comprised by four findings, including: a large hole between the two pumping chambers of the heart (ventricular septal defect, or VSD); a tightening or obstruction of the area leading out of the heart to the lungs (pulmonary stenosis); an overriding aorta; and thickening of the right ventricle.

At 3.5 months old, this tiny baby had surgery to repair the four defects. While she’s doing fantastically well now — a strong, independent, stubborn little girl who seems perfectly normal, aside from a large scar down the center of her chest — she will be monitored by a cardiologist for the rest of her life, and there may come a time in her future where other steps must be taken. This could range from activity limitation, to medication, to further surgery.

Before she was born, I knew nothing of congenital heart defects. Now that I know more, I’m startled by the statistics:

• Congenital heart defects are the #1 birth defect. Nearly one of every 100 babies is born with 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.
• Almost half of 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.
• 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.
• It is a proven fact that the earlier a CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.
• Despite all of the above, 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 and of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.)

SOURCES: Children’s Heart Foundation and March of Dimes

So on this Valentine’s Day, as you’re surrounded by heart-shaped decorations, take a moment to reflect on the the tiniest hearts. If you’re feeling generous, please support my friend’s participation in the March of Dimes March for Babies, as the March of Dimes continues to be a wonderful resource for families of CHD babies.   Her family is walking not only walking in honor of their daughter, but in memory of a friend’s daughter who died from complications of prematurity.