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 http://cherubshane.blogspot.com/
If his story touches your heart please consider donating to CHERUBS to help all the children fighting CDH. http://www.cdhdonations.org
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