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 ß÷ßäÉçÇø, 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 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 , 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.
“In the parents’ words, it’s a watershed of decisions,” says Castro-Codesal. “You're signing up to advocate for your child and your child’s well-being, often for the rest of your child’s life.”
Life-saving — and life-changing
Sawyer, now 11, was born prematurely with numerous medical complications, including a floppy airway. He spent his first four months in hospital. He’d been at home just three months when he “coded” in hospital — his breathing stopped and he had to be revived.
As soon as he received the tracheostomy, Sawyer began to breathe easier. He got stronger and started to catch up with some of the developmental milestones he’d missed.
“The tracheostomy was amazing for Sawyer. I would do it over again just for what it provided for him,” says Thomson-Kai. “But it was also traumatic and a lot of work. It was stressful and straining on our marriage because both parents processed that experience differently. There was a lot of grieving throughout the whole journey.”
When Sawyer was ready to go home for the second time, Thomson-Kai quit her job and took training on how to take care of him 24/7. She hired and trained caregivers to come to their home when she was asleep. The equipment had to be cleaned and the cannula suctioned regularly, and parents and caregivers need to be able to respond to an emergency. Sawyer had endless medical appointments. The family couldn’t go to the beach or camping because of the risk of contamination. Thomson-Kai fretted that she might neglect her older child, Amaya, age three.
She didn’t realize how much work it had been until Sawyer was decannulated two years later, and all the extra tasks went away.
“Sawyer now lives with some learning disabilities, but he has overcome many of the challenges they told us he might face,” she says.
Support from other parents is key
One of the places that Thomson-Kai sought support along the way was from other families of children who’d undergone tracheostomies. They would share tips on equipment and family life.
“I thought, ‘OK, if they're doing it, I can do it, too.’ Just having a mentor, having those families, I didn't feel so alone,” she recalls. “The hospital staff are great, but it's different than actually living that day to day at home.”
Thomson-Kai has since taken on a formal role as a parent mentor at the ß÷ßäÉçÇø Children’s Hospital and says it has been healing to tap into her own experiences to help others. She calls it her “heart work,” although she still has another job to pay the bills.
The study showed that peer mentorship is key for parents, so the team is now developing a cross-ß÷ßäÉçÇø network of parents who help each other. They’re also co-developing information resources and digital tools to ensure parents have the right information at the right time as they make decisions for their children.
The team is working with medical professionals at regional and territorial hospitals to understand the increased challenges to support rural families that have returned home with a medically complex child, and design targeted resources. They are also working on a provincewide toolkit to help integrate children with tracheostomies or other breathing supports in schools.
Putting families up front
Rather than looking at tracheostomy from the physicians’ point of view, the goal is to put families front and centre.
“As researchers we had to take a step back and see our biases,” says , a recent science graduate who helped with the study and plans to one day become a doctor. “We learned that there are psychological, financial and societal impacts for the parents.
“Tracheostomy raises so many questions for them,” says Scott, who continued to research family stress as a this summer, supported by the Stollery Children's Hospital Foundation.. “How am I going to manage my other children while managing my child that is medically complex? Am I going to reduce my hours at my job? Is my partner going to increase their hours? Do I feel comfortable with my friends coming over because my child is at a higher risk for infection because they have an open airway?”
Castro-Codesal, who is also a member of WCHRI, says there has been a shift towards inclusive research environments and patient and family-oriented research that allows them to participate in all stages of research and advocate for their own health needs. She now sees parents as partners at the clinic and co-investigators in her research program.
“We live in an era where there is a constant advancement of medical technology that allows us to treat patients who are critically ill, and we have a huge investment in bridging those patients out of the critically ill period,” she says. “But there is a huge gap in how we support these children and families later on, not just to survive but to thrive and reach their best potential.”
“We really owe these families.”
