In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Friday, April 19, 2013

April 19th is International Day of Congenital Diaphragmatic Hernia Awareness

Today is the International Day of Congenital Diaphragmatic Hernia Awareness.   This is my cherub, Shane (1/28/93-9/11/99), born with left-sided CDH and multiple other birth defects.  He spent his first 10 months in intensive care at Duke and came home on full life support (vent, trach, oxygen, feeding tube, blind and deaf).   We were told when we took him home against doctor's orders that he wouldn't live 2 weeks (they actually bet money on it.  1 surgeon bet just 24 hours).   They were wrong.

Miraculously he got his sight back at 11 months old, hearing back at 6 years old.  By the time he was 3 he was off the vent, oxygen and trach.  He walked, did sign language, loved books, matchbox cars and Sesame Street.  He was a very sweet, kind, happy little boy.   We lost him at 6 and a half to a very rare (1 in a million) complication called a Gastropleural Fistula, a result of his 6 CDH repairs. 

You can read his full story at

If his story touches your heart please consider donating to CHERUBS to help all the children fighting CDH.

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