KidSIM empowering families like Ely’s
Baby Ely struggled to breathe as soon as she was born.
At just six days old, she was admitted to the Neonatal Intensive Care Unit at the Alberta Children’s Hospital and diagnosed with basal meningeal encephalocele, an obstructive mass of tissue and fluid growing in her nasal cavity.
Due to her fragile size and state, surgery to remove the mass would need to wait until Ely was bigger and stronger. However, she would need intervention to help her breathe — at 29 days old, she received a tracheostomy.
While Ely’s parents, Aliya and Sam, were relieved their sweet baby’s condition had stabilized, they were also overwhelmed. A child with trach requires 24/7 care by someone equipped to handle the medical emergencies that may arise.
“We didn’t know Ely was going to be a medical baby and the amount of things we needed to learn in a hurry in order to take care of her was daunting,” says Aliya. “The care is hour to hour, minute to minute. Having a trach is life-changing.”
Aliya and Sam needed to learn basic day-to-day trach care – how it works, how to keep it clean and unobstructed, and what Ely’s breathing and function was like at baseline. They also needed to learn more stressful things, like changing her trach once a month, how to suction fluids out and what to do if it becomes blocked or dislodged, leaving Ely without oxygen.
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The KidSIM Pediatric Simulation program at the Alberta Children’s Hospital was an invaluable resource for them. Funded with community support, KidSIM is a simulation program for medical experts, families, and schools to practice real-time, emergency scenarios on high-fidelity, life-like mannequins. Care providers can keep their skills as sharp as possible and families like Aliyah and Sam learn how to care for their child’s medical needs.
KidSIM experts put together a presentation specific to Ely and her anatomy to help Sam and Aliya understand how her little body worked and what the trach was doing to support her. It was this training that allowed Ely’s family to take her home for the first time at 4 1/2 months old, as she no longer required the constant supervision of hospital specialists.
“KidSIM allowed us to practice everything we needed to get our baby home,” says Aliya. “There’s nothing like being home, where Ely could meet family, play with her brother, go for walks outside – she had never even been outside or breathed fresh air before. KidSIM gave her the opportunity to live her life and gave us the chance to be together as a family.”
Now three, Ely is trach-free. She brings her family and everyone around her so much joy. Aliya and Sam are incredibly grateful for the expertise and skill of their hospital team and the many generous strangers who helped make KidSIM a life-changing reality for families like theirs.