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)

Tuesday, March 11, 2014

"as if his heart were breaking"

Yesterday, I took my son to his gymnastics class.  Usually, I settle into a couch and stay out of the way.  Yesterday, we went to class at an unusual time.  There were fewer people milling around.  I decided to watch my son as he jumped and swung and tumbled.  I heard him yell in exultation when he made it all the way across the monkey bars for the first time.  I watched him do tricks on the trampoline…and I felt those cracks on my surface widening.  To love him is to make myself vulnerable.  To love him is to allow my heart to break.  

On our way home from gymnastics class, my son and I were listening to an audio recording of "The Lion, The Witch and the Wardrobe".  At one point, Tumnus, the faun cries inconsolably, “as if his heart were breaking,” according to author C.S. Lewis.   

My son interrupted the recording to tell me that his heart broke when he cried, too.  Then, he told me that his heart broke when he spit out the belch, our family’s euphemism for vomiting.  This boy, I love him so much.  I am so afraid of losing him, who he is now, his innocence, his happiness, his affection.   Even if he survives his surgery, I fear that some of him will be lost forever.