|Condition:||Treacher Collins Syndrome|
Kaylene and Gabe from Regina, SK were thrilled to have a second son in January 2023. After a smooth delivery, Theo came into the world with facial differences, including a very small jaw and ears that weren’t fully formed.
“We were overcome with so many emotions, especially fear and confusion. Would our little Theo be okay? Could he see? Could he hear? Could he breathe?” Gabe remembers about the moment Theo was born.
Theo was taken to the Neonatal Intensive Care Unit (NICU) and it became apparent the newborn would need specialized care. Theo was diagnosed with Treacher Collins syndrome, a craniofacial disorder that affects the development of bone and tissue in the head and face. The most critical feature is the underdeveloped jaw, which can block the airway.
In the days that followed, the condition of Theo’s airway worsened and there were many moments where he stopped breathing. Theo was eventually airlifted to Saskatchewan’s Jim Pattison Children’s Hospital (JPCH).
The young family spent the next eight weeks in the JPCH NICU and worked with many specialists, including a Paediatric ENT, plastic surgeon, respirologist, complex care team, social workers and dieticians. Theo received his Tracheostomy surgery on February 1, followed by a G-tube surgery on March 1.
Kaylene and Gabe were terrified that Theo’s condition would be too complex for a Saskatchewan hospital, but say the environment and care he received reassured them that JPCH was where Theo needed to be.
“Something that really made a big impact for us was actually the rooms in NICU – they were very spacious, and offered us a lot of privacy. But most of all, our medical team is what changed everything for us. All of our specialists were incredibly knowledgeable about what Theo needed, and had the experience to help him. We were blown away by the cohesiveness and confidence of our care team, and they quickly became our anchor,” Gabe said.
Today, Theo is a happy, cheeky little boy who loves watching his older brother Arthur dance and spending time with the family dog, Ivy. While having a child with a complex medical condition can be challenging, Gabe says being Theo’s parents has given their family a deeper understanding and appreciation of life and love.