Who gets a Congenital Heart Defect? (CHD)
The disease does not discriminate – in the United States, an average of one child out of every 125 live births has a heart defect. In certain locales the number is higher; there is a localized area, or a “Cluster”, of Hypoplastic Left Heart Syndrome (HLHS) cases in the Baltimore, Maryland area; and in the state of Wisconsin the incidence of CHD averages a staggering 1 in 74 live births. (14 CHD Births per 1000 live births)
Of all the CHD survivors I have had the pleasure to meet, the vast majority of them have been Caucasian. A 2001 study shows that CHD mortality is an average of 19% higher among blacks than it is among whites. Statistical trends showed that the gap did not seem to be closing. A 2008 study surmises that the ability to receive adequate care may contribute to the difference in survival rates. Perhaps the answer is even simpler than that: money.
Being born with a Congenital Heart Defect means that you will need specialized medical care. This care will probably best be provided in a large, specialized hospital far from home, unless you are lucky enough to have a family that resides nearby. Surgery, hospitalization, room and board for the parents are all costs that must be factored in: When I was in the ICU at Johns Hopkins in 1967, the ICU services cost $60 per day. After my 2002 stroke, ICU costs at Emory University Hospital in Atlanta was $2200 per day. Understand that this charge was just for the ICU bed – the actual care (monitors, medications, specialized staff) costs more.
Which begs the question: How many have perished from a heart defect not because of the defect, but because their parents couldn’t afford to go any further than their community hospital?
If the answer to that question is any number higher than zero, that’s too many.