Pam Thomson-Kai's son Sawyer was just seven months old when he stopped breathing. He was rushed to hospital, where he was revived and put on a breathing machine. Then the doctors asked his parents whether they could give him a tracheostomy — a surgical procedure to create an opening in the windpipe and allow air to flow to his lungs.
It was a scary decision, but Thomson-Kai and her then husband felt they had no choice because Sawyer's life was at stake.
Now, a team at the University of Alberta, including Thomson-Kai and three other parent partners, are working to better understand and create tools to support other parents facing that decision — and all of the challenges that come with it.
"It was kind of a no-brainer to go ahead with the tracheostomy for Sawyer to prevent further brain damage," remembers Thomson-Kai. "But it's not just asking, 'Do you want this in your child's throat?' It should really be, 'Are you going to be able to manage all the real-life things about living with a child with a tracheostomy?'"
For the Thomson-Kai family, the tracheostomy turned out to be not only life-saving, but also life-changing.
In their recently published paper in the journal Frontiers in Pediatrics, the U of A team looked at the best research available on the emotional, practical and ethical considerations for families who have to decide whether to give their child a tracheostomy. They analyzed 17 studies and identified seven themes, including finding hope, paying the bills, navigating changing relationships and adjusting to a new normal for life at home.
Principal investigator Maria Castro-Codesal, an associate professor of pediatrics and expert on home ventilation, credits the four parent partners on the team with refocusing the research away from just one decision point to broader questions about what families need at every step of the process.
