SASKATOON — Terry Hallett holds back tears as she describes what her family is facing regarding the condition of her eight-year-old son, Logan, who was recently diagnosed with Chiari 1 malformation, a condition where brain tissue extends into the spinal canal.
Some symptoms include dizziness, balance problems, muscle weakness, numbness, or tingling in the arms and legs. Hallett says Logan has been experiencing these symptoms frequently, forcing her to stop working as a licensed practical nurse.
Hallett was with Logan when she shared her story after reaching out to NDP Leader Carla Beck, who called her on Oct. 21. She and his son Logan, and Tessa Matstromatteo, another mother whose daughter Alice is suffering from seizures and waiting to get an MRI joined, Saskatchewan NDP Fairview candidate Vicki Mowat on Oct. 25, at the John D. Diefenbaker Memorial.
Hallett said they had to wait almost a year to receive Logan’s diagnosis, which can be treated by surgery. However, she added they have been struggling to secure the necessary treatment under what she described as Saskatchewan's "broken health care system."
“After our long journey, we finally got a diagnosis. Logan was diagnosed with extensive Chiari 1 malformation … and requires urgent brain surgery to help him live and fulfill his dreams,” said Hallett, adding that Logan dreams of becoming an astronaut.
“We have been waiting since the end of June for this surgery, and we still don't have a concrete date. Our neurosurgeon has been amazing and supportive but has limited resources, with only one scheduled operating room date a month. Just one."
Hallett, who has been an LPN for 25 years and worked as a disability case manager, said she could no longer work full-time. She stopped last week to care for Logan after receiving another call from his school about his condition.
“I left acute care to take care of him. As of Friday, I can't do it anymore because I go to school two or three times a day. I don’t leave the house when he’s at school or isn’t with me because I’m too afraid,” said Hallett.
“That's why he's here with me; I was too afraid to leave him at home, at school, or with a babysitter. He gets these breathing problems, which are becoming more frequent. Our family is not doing well emotionally right now, and we're just struggling to figure it out.”
She said it has been distressing to see, as both a healthcare worker and a mother, how inadequate the healthcare system has been over the past few years, particularly during their journey to get Logan diagnosed.
“I can’t imagine how people without support manage because even the hospital support is lacking. It’s scary. I’m scared. I’m scared he’s going to die because that’s our reality. The only thing that will save him right now is surgery,” added Hallett.
She said Logan is at risk of a massive, potentially fatal stroke. As a result, they have even had conversations about organ donation as part of their reality in dealing with his breathing issues.
“The only fix is surgery, and I found out Monday that the surgeon only gets one day a month of scheduled surgeries. I don’t have words to describe it. Once a month—that’s all they get. It’s insane, in my opinion,” she said.
“Our neurosurgeon at the [Jim Pattison Children’s] hospital wished she could have done the surgery the day she conducted our initial assessment. She spent two and a half hours explaining everything because it’s a serious procedure.”
The surgery carries significant risks, and Logan would need to stay in the ICU for at least five days.
