A Broken Heart

Incidence:
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)
Treatment:
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)
Mortality:
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)

Monday, December 23, 2013

the trouble with hope...

Although I am still very excited about the research into TEVG that I posted back in October, I realize that it will have no application for Turnip.  Earlier this week, we met with a local surgeon to discuss Turnip's continued care.  When I brought up this research, the surgeon reminded me that Turnip will need a vessel with an attached valve.  The research about which I was so excited only extends to vessels, not valves.  So, so much for that great plan. 

We're meeting with a surgeon in a neighboring city early next month.  Maybe he'll have some alternative ideas.