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, October 25, 2014

Oedipus, much?

This morning, as I pulled small boy onto my lap, I told him I loved him.

Me: "May I always be your mother?"
SB: "Until I grow up."
Me: "What will I be when you grow up?"
SB: "[my sister's] mother."
Me: "And what will my relationship be to you?"
SB: "Your husband."
Me: "Really?"
SB: "Yes.  Maybe then Papa will have died."


Tuesday, October 21, 2014

semi-annual cardiology report

Yesterday visit to the cardiologist was: boring!

Boring visits are the best.

Overall: Small boys heart rate is down (66) BP is down (108/48) and heart looks good.  His pulmonary trunk (that was replaced) still looks pristine.  His aorta/truncus still looks funky, but is working well.  The walls of his heart are not thickening.  The chambers of his heart are not enlarging.  His heart shape is re-normalizing as his heart re-adjusts to having an easy path for blood to flow from his right ventricle to his lungs.

Small boy is still ...small (height = 15%ile, weight = 8%ile).  However, his bald spots are gone: his hair has completely filled back in.

To celebrate, I took small boy on a tour of my school (he wanted to see my desk), bought him a chocolate bar at the snack kisosk, and we rode the bus home together.  I forgot how much fun the world is when you are five years old: small boy wanted to explore every rock, stairwell and window in the hospital.  We counted 10 motorcycles, 1 ambulance and 5 busses.  We explored the train tracks and jumped off of boulders.  It was a good day.

The best news is: we don't have to go back for 6 months!!!!!

Thursday, October 9, 2014

a day like this

goodbye, Sandra Shaw Courter