B.C. reverses course on changes to school tube-feeding program after backlash from family

Michelle Tory's son Jaxton has Cri du Chat syndrome, and relies on a feeding tube for meals.

Jaxton Tory did not get to start Grade 6 with his peers in Ladner, B.C., this week, due to his diet.

The 11-year-old has a rare genetic disorder called Cri du Chat syndrome and has relied on a feeding tube since he was three weeks old, but recent changes to school tube feeding services placed restrictions on his home-blenderized meals.

Earlier this year, Nursing Support Services—the BC Children’s Hospital program that delegates care plans for students with complex needs—announced it would begin enforcing requirements for a recipe of all home-blenderized feeds, down to the gram or millilitre of every ingredient. Prior to this school year, exemptions were made if a child’s doctor or care team signed off on the nutrition plan.

In addition, NSS also revealed new restrictions for syringe hydration, placing limits on the schedule and volume of water given to students.

For months, Jaxton’s mother Michelle has been fighting the restrictions, arguing they’re discriminatory and unfeasible for families with special needs children.

“We face challenges every single since day—we have extra stuff on our plate just to do basic care for our children,” says Tory, a mother of two. “If I put lasagna in a thermos for one child to take to school and I put some in a blender for my other son, I don’t know whether the blended piece is extra meaty or has more vegetables. This enforcement is overreaching, and it’s just not practical as a parent.”

In addition, she worried her son would miss out on class or school events due to his hydration schedule.

Changes reversed, but system fixes still needed

On Thursday, NSS reversed course and removed the new restrictions on recipes and hydration, reverting back to the previous standards.

A spokesperson from B.C.’s Health Ministry says the change was a direct response to a parent-led petition and advocacy.

“We take feedback from families very seriously, and we are working to address tube feeding practices in the school setting with our partners at BC Children’s Hospital,” the ministry wrote in a statement to CTV News.

It goes on to explain that the current system for tube feeding in schools via NSS has a number of system challenges that need to be addressed.

Examples provided include that some medical orders provided to schools are out of date, written by a registered dietician rather than a physician, or direct school staff to provide feeding “as per parents.”

“It is…important to note the distinction between care provided by parents/guardians at home versus care provided in the school setting by non-medical school staff under the direction of NSS nurses,” reads the statement.

The ministry says it will be working to develop a new system that “helps align tube feeding with practice standards, while enabling flexibility and greater autonomy for parents in meal decisions for their children.”

Doctor commends parents’ advocacy

Dr. Scott Ramsey, an assistant professor with UBC’s School of Nursing, says a variety of children require tube feeding for a number of reasons, and warns against rigid restrictions.

“As a nurse, I can tell you that no patient is the same,” Ramsey tells CTV News. “From a policy standpoint, it’s obviously good to have standardization, but there needs to be flexibility on a case by case basis. The needs of the child should be first and foremost.”

As the parent of a young child, he can understand why families like Tory’s are frustrated.

“Every child is entitled to food, it’s a human right, and everyone else is allowed to bring what they want to school, food wise—with the exception of peanut butter if it causes some students anaphylactic shock,” he explains.

“Caregivers know their child the best, so continue to advocate from them,” Ramsey advises. “You’re the biggest voice for your child.”

Celebrating a 'partial win'

Tory describes the change as a “partial win” that’s been dampened by miscommunications between provincial agencies.

After learning about the form change, she tried taking Jaxton to school Thursday morning, only to be told he couldn’t stay because the Fraser Health leadership team was unaware of the latest developments, which had yet to be updated online.

“There is so much wrong here and there’s still so much work to do,” Tory said.

She’s disappointed that Jaxton is missing more school after years of pandemic disruptions.

“It’s just been enough. Our children deserve education, our children deserve to be in school, our children deserve to be with their friends.” Tory says. “I wish people could just see past his disability and just see him as a child.”