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)

Thursday, September 1, 2011

FDA trials

It has happened--what I was waiting for.  This month, the federal government gave scientists approval to begin testing home-grown heart parts in the U.S.  Two scientists at Yale University have created blood vessels using patients' own cells.   They started implanting these vessels in patients 10 years ago in Japan.  Now, the FDA has given approval for them to start placing these blood vessels in pediatric patients in the U.S.  This is just thrilling.  This is the one breakthrough that I have wished for for Oliver.  If he could get a living vessel grafted onto his heart the next time he goes in for surgery, there is the chance that he would never need another surgery---because the living vessel would grow with him.