Pam Thomson-Kai\u2019s 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 \u2014 a surgical procedure to create an opening in the windpipe and allow air to flow to his lungs.\u00a0<\/p>\n
It was a scary decision, but Thomson-Kai and her then husband felt they had no choice because Sawyer\u2019s life was at stake.\u00a0<\/p>\n
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 \u2014 and all of the challenges that come with it.<\/p>\n
\u201cIt was kind of a no-brainer to go ahead with the tracheostomy for Sawyer to prevent further brain damage,\u201d remembers Thomson-Kai. \u201cBut it\u2019s not just asking, \u2018Do you want this in your child’s throat?\u2019 It should really be, \u2018Are you going to be able to manage all the real-life things about living with a child with a tracheostomy?\u2019\u201d<\/p>\n
For the Thomson-Kai family, the tracheostomy turned out to be not only life-saving, but also life-changing.<\/p>\n
In their recently published paper<\/a> 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.\u00a0<\/p>\n Principal investigator Maria Castro-Codesal<\/a>, 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.\u00a0<\/p>\n \u00a0\u201cIn the parents\u2019 words, it\u2019s a watershed of decisions,\u201d says Castro-Codesal. \u201cYou’re signing up to advocate for your child and your child\u2019s well-being, often for the rest of your child\u2019s life.\u201d\u00a0<\/p>\n Life-saving \u2014 and life-changing<\/p>\n Sawyer, now 11, was born prematurely with numerous medical complications, including a floppy airway. He spent his first four months in hospital. He\u2019d been at home just three months when he \u201ccoded\u201d in hospital \u2014 his breathing stopped and he had to be revived.\u00a0<\/p>\n 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\u2019d missed.\u00a0<\/p>\n \u201cThe tracheostomy was amazing for Sawyer. I would do it over again just for what it provided for him,\u201d says Thomson-Kai. \u201cBut 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.\u201d<\/p>\n 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\u2019t 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.<\/p>\n She didn\u2019t realize how much work it had been until Sawyer was decannulated two years later, and all the extra tasks went away.\u00a0<\/p>\n \u201cSawyer now lives with some learning disabilities, but he has overcome many of the challenges they told us he might face,\u201d she says.\u00a0<\/p>\n Support from other parents is key<\/p>\n One of the places that Thomson-Kai sought support along the way was from other families of children who\u2019d undergone tracheostomies. They would share tips on equipment and family life.<\/p>\n \u201cI thought, \u2018OK, if they’re doing it, I can do it, too.\u2019 Just having a mentor, having those families, I didn’t feel so alone,\u201d she recalls. \u201cThe hospital staff are great, but it’s different than actually living that day to day at home.\u201d<\/p>\n Thomson-Kai has since taken on a formal role as a parent mentor at the Alberta Children\u2019s Hospital and says it has been healing to tap into her own experiences to help others. She calls it her \u201cheart work,\u201d although she still has another job to pay the bills.<\/p>\n The study showed that peer mentorship is key for parents, so the team is now developing a cross-Alberta network of parents who help each other. They\u2019re 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.<\/p>\n 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.<\/p>\n Putting families up front<\/p>\n Rather than looking at tracheostomy from the physicians\u2019 point of view, the goal is to put families front and centre.<\/p>\n \u201cAs researchers we had to take a step back and see our biases,\u201d says\u00a0Sela Scott<\/a>, a recent science graduate who helped with the study and plans to one day become a doctor. \u201cWe learned that there are psychological, financial and societal impacts for the parents.<\/p>\n