The May/June 2008 issue of Paediatrics and Child's Health includes a Commentary by Barbara Farlow about the life and death of her daughter Annie. "The decision to accept disability: One family's perspective" shares how she and her husband prepared for the birth of Annie, embraced her with round the clock care in the ICU, celebrated her return home, her first smile and a visit to Niagara Falls. Having been involved in every decision relating to Annie's birth and life, weeks later when she experienced breathing problems and was brought back in to ICU, neither parent was aware a no-resucitation order was placed on Annie.
"The infant with predicted disabilities lives the most fragile of lives. The fate of our child rested in the hands of the physicians and health care providers. Unilateral treatment decisions and the absence of our input into or awareness of these decisions caused a double tragedy. We were denied both a chance to prolong Annie's life and a plan for her to die a dignified and peaceful death with her loving family by her side."
Barbara Farlow speaks tonight at University of Toronto Joint Centre for Bioethics(see the announcement).
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