Nina came into Maggie and Dario’s lives in a hurry. They had been on the waiting list to adopt a second child and they were given just one hour’s notice when a birth mother had chosen them as adoptive parents for her newborn baby girl. They rushed to meet baby Nina. Maggie remembers a doctor mentioning Nina’s head looked on the small side, but this sweet little girl was given a clean bill of health and Maggie and Dario were so excited for her to join their family.
In the coming weeks and months, it became apparent that something was terribly wrong. Nina was vomiting frequently and wasn’t meeting her milestones. Maggie and Dario frantically searched for answers as to what might be happening, but it wasn’t until they were referred to the Alberta Children’s Hospital that they learned what was going on. An MRI revealed Nina suffers from a brain malformation called schizencephaly. Even though this condition means Nina can’t walk, talk, sit or eat on her own, there was “power in knowing,” says Maggie, who was relieved to have an explanation for why her sweet baby wasn’t developing normally. Soon, the family began to meet the people who would become vital in their journey here at the hospital.
“Team Nina,” as Maggie calls it, includes physiatrist, Dr. Lee Burkholder, who works with Nina on muscle tone, movement range and pain management. It was Dr. Burkholder who prescribed a life-changing drug for Nina – one that allowed her to sleep soundly after years of restless nights. Then there’s orthopedic surgeon, Dr. Simon Goldstein who performed a multi-level surgery to reconstruct Nina’s hips and loosen tense muscles. Without this operation, Nina’s spine would not have been able to grow straight and would have caused her a multitude of problems down the road. Thanks to Dr. Goldstein, Nina has a much better range of motion in her legs, says Maggie. “I trust him so much. I know she’s safe with him,” she says of Dr. Goldstein.
Another important part of Team Nina is the group of specialists in the ACETS program (Augmentative Communication and Educational Technology Service), who helped give Nina a voice. Though the family had found ways to make basic communication possible with Nina – she would blink to say ‘yes’ and turn her head left to say ‘no’ – whatever she was thinking or feeling was essentially trapped in her head with no way out. The ACETS team introduced Nina to a technology called Eye Gaze, which responds to eye movement the way a computer responds to a mouse command. The software on Nina’s Eye Gaze device is programmed with words and phrases she can focus on and then the technology verbalizes them for her. With her newfound vocabulary, Nina quickly communicated the word ‘Dad’ – one of the most emotional things Maggie and Dario have experienced – and shortly after, ‘I love you.’
Maggie and Dario are so grateful to everybody on Team Nina, who have helped their daughter grow and develop in a way that once seemed daunting, or even impossible. Maggie also feels thankful to have such a skilled, comprehensive and multidisciplinary group of specialists all under one roof.
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