On January 3, 12-year-old Airdronian Phoenix Radziwon was scheduled for brain surgery at the Alberta Children's Hospital in Calgary. This wasn't the first scheduled surgery for her, as her original surgery date had been in late November 2022, though that date was cancelled due to the lack of ICU beds in the pediatric ward.
On January 2, the day that the family was preparing to go into the Alberta Children's Hospital before the surgery, Johanna Hirons, Phoenix's mom, received a troubling call.
"They called and said it doesn't look good, the PICU [Pediatric Intensive Care Unit] is full again and they don't think it's going to happen," Hirons said.
While the surgeon did call the family back later that day and mentioned that the province had directed hospitals and staff do to everything in their power to get surgeries done and there was a chance the surgery would go ahead, so, the family once again got ready and headed to the hospital.
"We were on the way to the hospital and he called back and said it doesn't look good; they can't get any extra staff and they have 15 kids in the ICU."
15 beds are the maximum capacity in the PICU at the Children's Hospital, though Hirons said that the surgeon told her that 12 beds occupied are considered full. Hirons noted that the continued explosion of severe RSV, influenza and COVID-19 cases in children has led to the healthcare system being overburdened. According to provincial data, between 2022-2023, 51 children between the age of 0-19 have been admitted to the ICU for the flu. As of January 4, 2023, two children were in the ICU with COVID-19.
With the second surgery date cancelled, the family turned around and drove home.
"I know that she needs surgery for her long-term health, but it is terrifying to hand your baby over to surgeons to operate on their brain. So, I have a lot of reservations about doing that," she said. "[But] it is very disruptive, to have to go through that process of getting ready to do that emotionally and mentally and then it not being done."
While the family has tried their best to re-organize their lives time and again, they are also grappling with how they came to this point.
In May 2022, Hirons said that her daughter who has trisomy 21 (Down Syndrome), type I diabetes and alopecia, had fallen out of bed in the morning and was unable to move. While her mom did call 9-1-1, she soon discovered that her daughter had lost the ability to walk. Phoenix was also unable to talk and the right side of her face had dropped.
Doctors would later note that Phoenix had suffered a stroke in the left hemisphere of her brain and the right side of her body had been impacted. The stroke was caused by Moyamoya syndrome, which is a rare, progressive cerebrovascular disorder that narrows and blocks arteries delivering blood at the base of the brain.
One of the most common symptoms of Moyamoya in children is strokes. It would take months for Phoenix to recover, including her speech, which her mom says the family is still working on with a speech therapist. The surgery that Phoenix was meant to undergo would restore blood flow to the brain by bypassing the blocked arteries.
"We support the public health care system and I'm happy to pay my taxes so that people don't go bankrupt for medical emergencies. That's the social contract we have in Canada, which I'm very happy to be part of," Hirons said. "But part of that is, that we need to have timely access to the interventions, the surgeries and medical care that our children and ourselves require and we're not getting that right now."
Apart from the emotional toll, Hirons has said that multiple family functions have been postponed over and over, including her nine-year-old twins' birthdays and the family's extended Christmas. While she is very well aware that a birthday party may not be a necessity, for a nine-year-old it is the world. Hirons said that it is also difficult to have to explain to Phoenix's siblings, who are scared for her, that after so much emotional and mental preparation, the surgery will not be going ahead.
However, Phoenix, who has always been quite a happy-go-lucky little girl, seems to be taking things in stride.
"She's quite resilient, as she has been through a lot this year, in terms of changes to her health, and the things that we have to do to help her manage her health."
The family has yet to hear about a third potential surgery date and her mother is worried about the possibility of Phoenix's condition worsening.
"It is possible that she's having mini strokes and is not able to tell us about it. There are times when she says her arms are tired, and her legs are tired and these are things that other people with moyamoya describe as the effects of their mini-strokes or their TIAs [transient ischemic attack]," Hirons said. "It's possible that more damage is being done that we don't know about. We will only find out, once they go in [and do the surgery]."
According to data provided by the provincial government, in October 2022, wait times for surgeries which are classified as interventions of the brain and spinal cord, the Alberta Children's Hospital 90th percentile wait time, was eight weeks. The eight weeks were for both urgent and semi-urgent cases. The average wait time however was slated at two weeks' time. No data has been made available after October 2022 for the time being.
Hirons concluded that the surgery wait time is not just about getting into an operating room, it is the aftercare and the staff that are meant to provide it that are in short supply, which has created a backlog in the system; a backlog that has yet to be addressed effectively.
"I just want to cry because I can't do anything about it. I can affect no change, other than by telling my story. I hope that at some point, someone in power will make a change."