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 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. 

Thursday, October 10, 2013

hopeful research

I've been following with interest the work of Toshiharu Shinoka, Christopher Breuer and colleagues.  These are the guys who have begun testing out tissue engineered vascular grafts in kids.  They build a blood vessel out of man-made materials, add cells from the patient's bone marrow to the synthetic vessel and then implant the vessel in kids during open heart surgery.  These vessels are able to grow with the kids, limiting the need for future surgeries to replace a vessel that the child has outgrown.

This morning, I came across a fairly recent article from this research group.  I was particularly interested in the last full paragraph on page 569 (page  4 of the pdf) and the first full paragraph on page 560 (page 5 of the pdf): FDA approved clinical trials are underway in the US.   At least one patient has received a tissue engineered vascular graft and is asymptomatic at 6 months.


risk of death with repeat surgeries


So, I've been wondering about the risk for death with repeat open heart surgeries--like the ones Turnip will need in the future.  I found two articles that address this topic.

I was surprised to learn that the mortality (risk of death) associated with a child's first open heart surgery has fallen dramatically.  When I was first searching for information on this topic, the in-hospital death rate that I found for truncus arteriosus was approximately 20%.  This mortality rate includes surgical deaths as well as death from other causes.

In the first study linked above, researchers found the death rate during a child's first open heart surgery dropped from 23.6% before 1980, to approximately 4% between 1991 and 2001.  These numbers reflect deaths that occurred specifically during the same procedure that Turnip had: the placement of a right ventricle to pulmonary artery conduit.

In this same study, researchers found that the risk of death during a subsequent surgery to replace the conduit was about 5%, with the more recent surgeries having a lower risk of 2%.

The second, more recent study, concluded that "Subsequent sternotomy [sternotomy is just a fancy word for open heart surgery] showed increased early mortality, yet neither sternotomy number nor cardiac injury was an independent predictor of early death." In other words, the more open-heart-surgeries people have the more likely they are to die during their open-heart surgery....but the number of surgeries alone doesn't fully explain the increased death rate.  Some of the people in this study had 5 open-heart-surgeries!

This paper also indicated that the longer the wait was between surgeries, the more likely it was that the patient would survive...and the younger the patient was during the surgery, the more likely it was that they would survive. 

Overall: I'm quite relieved.  The current death rate for open heart surgery is much lower than I believed.   Although the risk of death increases with additional open heart surgeries, Turnip is still quite young.

Tuesday, October 8, 2013

last post with personal medical information

Small boy has gotten old enough that I feel uncomfortable sharing his personal medical information in such an open forum.  For now, I am suspending such posts on this blog. 

Thursday, April 4, 2013

semiannual cardiology appointment

On Monday, we visited O's cardiologist.  It looks like his aortic valve is a little leakier, but neither ventricle is any more enlarged than it was last time.  So...unless there is a dramatic change (which isn't expected) Oliver won't need surgery this summer.  It helps that he is a mini-midget--15%ile in both height and weight.  We want that pulmonary conduit to fit for as long as possible!