Five CHD Questions: Who?

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.

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4 Responses to “Five CHD Questions: Who?”

  1. heather Says:

    not wanting to start any health-care debates (b/c i’m aware that you’re from the states and this is a big issue down there) but…

    i am soooooooooooooooooooo glad we live in canada, where cost of health care is not an issue! when asher was diagnosed at 8 days with HLHS, he was immediately put in PCCU (at $2500/day… just for the bed), and started on prostaglandins (two doses daily, at $1500/dose), and countless other meds (he was more machine/tubes/etc than baby). this continued for 9 days till his first surgery, and the prostaglandins, morphine and so many other meds were continued for a couple more days. since then, he has been through 11 other surgeries, including 3 open heart surgeries and a pacemaker, countless clinic and emerg visits, and 26 hospital admissions. there is absolutely no way we could have afforded to keep him alive even one day at that cost. my heart breaks when i think about families who end up losing their precious heart babies simply because they cannot afford to keep them; it’s just plain wrong.

    thanks for the post; i’m going to share it on my facebook. ❤

  2. Stefenie Says:

    This was an interesting post. I definitely agree in the money being a big factor in a child’s survival. Not all families have the resources to make sure that their child is getting the best quality of care. It is very sad to think that is really happening but it’s true.

    I had to quit my job to take care of Logan because of all of the many cares he needed like tube feedings every three hours, meds twice a day and the fact that he was very sick made it impossible for him to even go to daycare. Losing that one income was very hard on our family but thankfully our hospital social worker worked very hard to help us get the help we needed. Without her we would have ended up in serious financial trouble. Obviously we would do anything to make sure that Logan got the care he needed and would sell everything we have. However for some people that don’t have anything to begin with like a car for transportation or a stable roof over their head they don’t have many options. It is heartbreaking to think that a child can’t get the care they need because of a price tag on medical care and related expenses. It shouldn’t be that way.

  3. Anonymous Says:

    Hi Steve, not wanting to start any health-care debates either but am a little confused; can you clarify cost type further. Are you talking incidentals like travel for families or actual medical care in ICU and actual surgery for a child? I know reality cost are high everywhere but who actually foots the bill is interesting.

    • Steve Says:

      Here I am speaking of all costs in general – costs for medical care, plus transportation, lodging and meals for the child’s parents, etc. The $2200 per day while I was in the Intensive Care Unit (ICU) in Atlanta was basically for the ICU room only – medicine cost extra, the doctors who oversaw my care added their fee, my parents had to pay their hotel room bill, buy meals in the hospital cafeteria, etc.

      I hope this helps make things a little clearer.

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