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When Ashley was five months pregnant, she found out her baby had two major congenital heart defects. She and Travis were told their little girl would need surgery soon after she was born. At six days old, Sawyer-Mae had her first open heart surgery in Edmonton. At 17 days old, she’d already had three open heart surgeries. She was also diagnosed with DiGeorge Syndrome, a genetic condition causing delays in speech, fine motor skills and learning among other things.
At two months old, Sawyer-Mae came home to Calgary for the first time since her birth. She was transferred to the PICU at the Alberta Children’s Hospital, where she spent one month before staying on Unit 2 for another month. Sawyer-Mae couldn’t handle food and was struggling to gain weight. At three months old, she had an NG tube inserted, which she would use for feeds for a whole year. The hospital’s Home Nutrition specialists taught her parents to manage her feeds.
In April 2014, Ashley and Travis learned Sawyer-Mae was again in heart failure and would require a fourth open heart surgery. They bumped their wedding up five weeks to be before the operation. Sawyer-Mae ended up suffering three strokes after that surgery. She was in hospital five more days before going home to Calgary.
The Alberta Children’s Hospital has become a home base for the Symons. Sawyer-Mae sees cardiology (heart follow up); immunology (DiGeorge Syndrome); ENT for ear tubes (she suffers from velopharyngeal insufficiency – a condition where the mouth and nose fail to separate); nephrology (kidney issues related to medications she’s been on); ophthalmology (vision condition called strabismus); surgery, (to monitor her incisional hernias and a bump on her chest that were the result of her operations); and neurology (stroke follow up).
Ashley says she feels like the staff at the Alberta Children’s Hospital are part of her family. She remembers calling the cardiology clinic with questions at 2 a.m. and getting immediate and helpful responses. She remembers breaking down one day and a PICU intensivist crying with her. Sawyer-Mae will be involved with the hospital until she’s an adult and Ashely is incredibly thankful for everything that is provided all under one roof. “I could never move. I could never leave. I can’t imagine better doctors for her,” she says.