12-year-old Airdrie girl waiting since November for brain surgery after procedure cancelled twice

An Airdrie girl with a rare and dangerous disorder has been waiting since November for brain surgery. Her surgery date at the Alberta Children's Hospital has been cancelled twice because there was no room in the ICU.

Ongoing surge of respiratory illnesses resulting in capacity issues, says AHS

A little girl in a pink jacket waves one arm in the air while holding a doll in the other. A tube is visible entering her nose.
Phoenix Radziwon, 12, has moyamoya disease and is waiting for a surgery to help improve blood flow to her brain. She uses a nasal tube to help with liquids, as her ability to drink safely has been affected by a stroke caused by the disorder, says her mother. (Submitted by Johanna Hirons)

In May, Phoenix Radziwon, a 12-year-old in Airdrie, woke up unable to walk or speak. 

She was rushed to the Alberta Children's Hospital in nearby Calgary, where it was discovered she'd suffered a stroke, says her mom, Johanna Hirons.

Doctors later diagnosed the girl with moyamoya disease — a rare and dangerous disorder that blocks blood flow to the brain.

"So Phoenix has had multiple ministrokes that we never knew about until she had her big stroke," said Hirons in an interview on the Calgary Eyeopener.

"Through the process of discovering why she had the stroke, we found the moyamoya disease, which they think is linked to her having Down Syndrome as part of a larger syndrome."

A surgery was scheduled for Nov. 22 at the children's hospital to reroute an artery, directing more blood flow to the brain, which would reduce the chance of further strokes, Hirons said.

But with a surge in respiratory illnesses and sick children, the family was called the morning of the procedure to reschedule, Hirons said.

An aerial view of the Alberta Children's Hospital.
Drone shots of Alberta Children's Hospital in December 2020. (David Bajer/CBC)

The surgery was set to go ahead on Jan. 3, but again, it was cancelled the afternoon before. Hirons says her daughter's surgeon told them there was no available room in the hospital's intensive care unit (ICU), which has 15 beds.

"[Phoenix] has a developmental delay, and it just takes her longer to process things," Hirons said. 

"It takes longer to prepare her. And then when we have to cancel it, all of a sudden, it takes some time to prepare her for not going as well."

LISTEN | Johanna Hirons describes what it was like to hear her daughter's surgery was cancelled, again:

A 12-year-old girl from Airdrie has been waiting since November for brain surgery. We hear from her mom.

In a statement Thursday, Alberta Health Services (AHS) said it had to postpone two out of 133 scheduled surgeries at the hospital this week. In December, 15 surgeries were postponed and most have been rescheduled.

"As we've done over the past several weeks, we need to postpone a small number of surgeries on a case-by-case basis based on pediatric ICU and site capacity at Alberta Children's Hospital," AHS said in the statement.

"Our staff are working to ensure as many surgeries as possible are performed, but the site is still under significant strain."

Three girls sit around a table looking at different paints. One paints a picture on a piece of paper.
Phoenix is flanked by her two sisters, nine-year-old identical twins Wren, left, and Ash, right. (Submitted by Johanna Hirons)

The health authority says it's basing its decisions on the best medical advice for each situation. All emergency and cancer surgeries are continuing. 

A statement from AHS earlier in the week indicated an ongoing surge of respiratory illnesses as one of the reasons behind the capacity challenges.

The statement said staff are being deployed to priority areas where possible. AHS is expanding inpatient capacity and opening a heated shelter space so patients aren't waiting in the cold.

It's all little comfort to Hirons, who says her daughter's surgery still hasn't been rescheduled after the second cancellation.

"It could be anywhere between two and four weeks from now, but we've been waiting since November. So you know, any significant delay is still hugely concerning for us," she said.

"I'm heartbroken for all those families that are going through that right now, but equally heartbroken for my daughter, who can't get timely access to the care that she desperately needs to potentially reduce her risk of further strokes."

With files from Elizabeth Withey, Loren McGinnis