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)

Monday, December 12, 2011

quarterly cardiology appointment

Yup,  we have reverted.  At today's visit Oliver's numbers weren't so great.  Instead of dropping Oliver's final med, our doctor decided to increase the dose.  Instead of waiting six months, we will be going back again in three.  Instead of an echocardiogram, at his his next visit Oliver will have an MRI to get a more detailed look at what is going on inside of his chest.

From the echo today, it looks like Oliver's conduit will need replacing sooner rather than later.  His truncal (aortic) valve still looks serviceable, but his conduit is narrowing both above and below the pulmonary valve and his left pulmonary artery looks small.

I knew there was something wrong when Oliver's echo lasted an hour. 

On the upside, he isn't blue, doesn't struggle to breath and doesn't lack energy...yet.