Improving Care for Kids Like Braeden
The vast majority of children rely on care from one or two specialists over the course of one or two visits before returning to care from their family physician. For others, like Braeden, their relationship with the Alberta Children’s Hospital spans their entire childhood and involves many experts and clinics.
When Lia talks about her son, Braeden, she does so with a huge smile. The bond they share is undeniable. For the full 10 years of his life, Lia has not only been Braeden’s mom, she’s been his nurse, physical therapist, dietician, counsellor, advocate and more. Braeden was born with a genetic syndrome known as Hajdu-Cheney which means that his bones and almost every organ in his body are afflicted in some way.
“After he was born, he spent more than seven months in hospital as the team tried to figure out where to start,” says Lia. “In order to save his life, he needed heart surgery right away. Once he recovered from that, their focus moved to his lungs. When he was finally discharged, we spent all our time going back and forth to the hospital for appointments with various clinics – often up to four times a week. It was a lot … especially since we had two other kids at home. There were many days I felt completely overwhelmed.”
With Hajdu-Cheney, the focus of Braeden’s care depends on the organ most challenged at the time. As a result, Lia and Braeden have a relationship with over 20 different clinics and specialists at the Alberta Children’s Hospital alone. “This doesn’t include his school or community supports,” says Lia. “Trying to keep everyone informed on the latest developments with Braeden is basically a full-time job.”
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Over the course of his life, Braeden has been hospitalized countless times for months on end. And while Lia will say that the hospital is a place filled with wonderful people who have become like family, it’s not a place where they want to spend so much time.
“It’s hard on families to be apart like that,” she says. “It’s a constant balancing act trying to take care of his health and the well-being of our entire family, not to mention my personal mental and physical health.”
Lia is incredibly proud of her son and how he has faced the challenges that have come his way. She is inspired by his strength of spirit and unwavering resilience – traits she sees in many of the other children and families with complex medical journeys at the hospital.
“We are a group of warrior moms,” says Lia with a chuckle. “We all know we couldn’t face this battle without the great teams at the Alberta Children’s Hospital. But there are days it gets really tiring trying to understand the best battle plan for our kids and keeping everyone marching in the right direction.”
Currently at the Alberta Children’s Hospital, there are about 200 medically-complex children who, on average, see specialists 100 times a year and require care from as many as 17 different clinics each. Due to the multi-faceted nature of their conditions, care can become disjointed resulting in inefficient, and sometimes unnecessarily costly use of healthcare resources. Learn more.
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