The Alberta Children’s Hospital has been caring for little Qira since before she was born. When Sara was 20 weeks pregnant, an ultrasound revealed Qira was missing fingers on her right hand and perhaps even more concerning, the fibre that connects the two sides of her brain too. Within six weeks, Sara, who works as a social worker at the Alberta Children’s Hospital, was meeting with specialists there who wanted to take a closer look at Qira through a prenatal MRI and genetics testing. Her parents prepared for the fact that because the ventricles of their daughter’s brain seemed to be filling with fluid, she might experience seizures, the inability to speak or walk and issues with feeding. They joyfully welcomed their beautiful baby girl to the world via planned C-section on July 14. To them, she appeared perfect, despite the fact she was missing two middle fingers on her right hand. Still, they couldn’t help but worry about her future – the functionality of her hand, and if people would accept her. Later that day, she was transported to the Alberta Children’s Hospital’s Edwards Family NICU to be monitored.
In the NICU, Sara loved the privacy of the rooms, the ability to sleep comfortably next to her daughter, and the chance to just be Mom. Qira met her team of specialists from the Congenital Upper Limb Clinic, Neurology and Genetics who ordered tests including an MRI, X-rays, an ultrasound as well as genetics testing to search for any genes responsible for her rare condition. Thankfully, the MRI showed the fluid build up was not as great as first thought. After seven days in the NICU, she went home on oxygen related to periodic breathing – sometimes she would just forget to breathe! Qira is now a part of Dr. Francois Bernier’s Care for Rare study to try to see if her two birth defects are connected. Her future includes regular MRIs and Neurology appointments to monitor her brain and possible surgery on her hand when she is older, but otherwise looks very bright. She will also have ongoing support from Occupational therapy and the Congenital Upper Extremities Clinic.
Sara and Brendon are thankful for Qira’s team of doctors who will continue to care for her throughout her childhood. As an Alberta Children’s Hospital social worker, Sara has always appreciated donor support, but after experiencing its impacts first hand, is even more grateful.
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