A Broken Heart

35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Thursday, December 16, 2010

the aftermath...

Yesterday, Oliver got a haircut.  All it took was: clippers, scissors, a comb, a sink full of water, a tooth brush, linking rings, and a pair of his sister's socks.  Photo of haircut to come.....

Monday, December 6, 2010

semi-annual cardiology appointment

Oliver went in to see his cardiologist today and everything looks good.  Oliver was full and tired when we arrived for our 11 am echo, so he lay quietly watching the video and playing with my ipod for the full 45 minute scan.  This visit he also got an EKG.

And now for the numbers:
weight: 24#10oz
height 33.3 inches
head circumference 19.2 inches
blood pressure 102/53

His EKG looked abnormal, but only in the way it should look abnormal for the sort of surgery he had when he was first born. 

His echo showed that:
His truncal (homegrown) valve looks good, if a little thick.
His pulmonary (donor) valve and conduit have only mild narrowing and thickening, trivial backflow and a borderline (mild/moderate) pressure gradient.

The doctor said that all of this taken together means that Oliver will probably be school aged before he needs any further work done.  He probably won't make it to his teens without replacing his homograft but he should make it 4-5 years.  The question at that time will be whether he needs both valves replaced or just a pulmonary replacement. 

This is different than what he said at the last appointment (surgery possibly as early as this summer) because the echo tech got a better echo reading this visit.  Oliver was much  more wiggly in June than he was this time, which made thing look like they were getting worse faster than they are. 

We are relieved.

Now, Oliver is napping in his new vroom-vroom.

Wednesday, December 1, 2010

eating epiphany

Last week, my friend who works in a GI clinic stopped by.  She said she had to tell me something.  She said she had a revelation for me. 

"O.K.," I said.

And then she proceeded to explain WHY heart babies don't eat well.  She explained (as it had been explained to her by the gastroenterologist she works with) that during heart surgery, the vagus nerve can be affected.  The vagus nerve influences a lot of the things that go on in our chest and gut-- things we don't even think about, like the rate at which our heart beats and digesting food. 

Anyway, among its many influences, the vagus nerve controls stomach emptying.  In some babies who have had heart surgery, the vagus nerve is damaged and the stomach does NOT empty as often as it otherwise would.  Because the stomach has not emptied, the baby feels full.  Because the baby feels full, the baby does not eat.

It made sense to me.  It gave me a sense of relief.  I can accept things I can understand.  I no longer worry at them, trying to figure them out.