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)

Saturday, August 6, 2016

special birthday present this year

After small boy's echo and cardiology visit in early June, he got sent for a stress test with doppler echo, and then a cardiac MRI.  Long story short: it looks as if he will be getting a new heart valve for his birthday this year. 

I had hoped to avoid the blood thinners for a while longer--at this point mostly because he still occasionally has some really scary nose bleeds.

His new valve won't change his activity restrictions as we've already adopted the guidelines that he will be on after he gets a mechanical valve.  We may have to change our diet to avoid some of our favorite foods that are high in vitamin K, though--like kale.  

My chest gets all clenchy, my stomach ties in knots, and my upper arms get all tingly and hard to operate when I think about it.  While typing this out, the area around my lips has gotten all tingly and I'm having a hard time convincing my fingers to hit the proper keys.