Ms. Barbara Farlow, Canada
Barbara Farlow is an engineer with an MBA who was redirected in her life to become a researcher after the death of her daughter Annie ten years ago. Annie had trisomy 13 and the medical care she received when she died at the age of 80 days was deemed by the Coroner’s Paediatric Death Review Committee to be “inappropriate.”
Barbara realized that physicians don’t understand the family experience of giving birth to a child with a life limiting condition. As a result, she partnered with two physicians who are leaders in paediatric ethics to survey and publish the lived experience of over 300 parents who gave birth to a child with trisomy 13 or 18.
Barbara presented the research at all major paediatric and ethics conferences in North America and subsequently co-founded the International Trisomy 13/18 Alliance.
Words matter; Communicating a difficult perinatal diagnosis to families honestly and compassionately