Brinley’s Story

Kaylee had every reason to expect her pregnancy with her daughter Brinley to progress easily — until her third trimester.

Brinley just wasn’t growing the way everyone expected – measuring too small. At 36 weeks gestation, Kaylee’s expert team determined the safest path to meet her baby girl would be inducing labour, and Brinley was born.

Despite Brinley’s small size, testing and images indicated she should be able to breathe on her own. To everyone’s surprise, she couldn’t. Brinley needed the expert clinicians in Children’s Neonatal Intensive Care Unit to jump into action.

Brinley was immediately put on CPAP – a continuous source of oxygen – to help her breathe. When she was just 24 hours old, she was fully intubated to ensure her breathing and needed a feeding tube.

The NICU’s expert care combined with equipment like her CPAP and feeding tube allowed Brinley to grow strong enough to go home!

With some continued difficulties swallowing, Brinley kept her feeding tube, but she and her family knew they’d have Children’s help every step of the way as they journeyed home. Most importantly, Brinley’s care team kept working to find out why Brinley had these unexpected difficulties.

Children’s genetic tests determined that Brinley lives with Charcot-Marie-Tooth disease (CMT), an inherited nerve defect. For Brinley, that means low muscle tone in her legs, poor reflexes and general muscle weakness.

CMT is a progressive condition, meaning Brinley will experience new complications as she grows. She’ll need Children’s Hospital for her whole life.

Thankfully, Brinley and her family have found so much comfort in the unwavering support of their compassionate Children’s Hospital team. Having a Children’s team comprised of world-class specialists and having access to special therapies, like music and art programs means that Brinley has the best care Canada can offer, and the hope and joy of child-centred programs.

Today, Brinley is a happy and thriving 7-year-old, while her multidisciplinary team continues to search for answers through ongoing genetic research!

With our community’s generosity during Dream Lottery, children like Brinley have expert health care teams who help them manage difficult diagnoses. With one ticket, you can be a part of providing leading-edge equipment, programs, education and research at Children’s Hospital. YOU can help ensure that hope lives at Children’s.