A Nanaimo mother is desperate to find medical help for her autistic son after being told the only specialist willing to operate can’t see him for almost a year.
Sixteen-year-old Gabriel Stuart needs surgery to address a painful toe condition, but the only specialist willing to do the work is in Victoria and isn’t available for another eight to 10 months.
The wait is too long for a vulnerable and disabled child in ‘obvious pain’, said his mother, Alexandria Stuart, who is concerned about infection and diminished quality of life. But the family seems to have little recourse.
According to Stuart, the medical receptionist handling Gabriel’s case called central Vancouver Island podiatrists and orthopedic, plastic and general surgeons, but none wanted to take on the procedure because “either they don’t do toes or because he was a pediatric case.” As members of the private sector, surgeons seem to be able to pick and choose procedures, she said, adding there seems to be no organization that can advocate for her son’s surgery to be expedited.
Island Health says physicians are independent business people and their offices – not the health authority – decide when patients are booked for surgery. And the College of Physicians and Surgeons of B.C reports it doesn’t have the jurisdiction to regulate the systems in which surgeons work.
“The fact that there is no specialist in the mid-Island willing or able to deal with this seems completely unacceptable to me,” she said.
“If this was you or me with an ingrown toenail and we had the mental capacity not to pick our toes and to wait and deal with it for eight or 10 months, it would be a different thing. This is a vulnerable child.”
Gabriel was diagnosed 18 months ago with proud flesh, a condition where skin grows over the toe nails. His doctor did not appear concerned at first because the issue is common, said Stuart, who was given care instructions.
But the condition started to worsen. Gabriel wouldn’t allow his parents to push the skin back on his nails and would compulsively pick at his toes. Instead of the nail growing out to heal, it started to burrow into his toes, causing inflammation, bleeding and soreness.
He is minimally verbal, but is usually happy and enjoys walks and playing outdoors, Stuart said. He now limps and cries about his ‘poor toes’ and asking to see “Dr. Hospital.”
She said he needs to have the excess skin cut away from his toenails – a procedure that’s normally done under local anesthesia in a podiatrist’s office. But because he had autism the procedure has to happen under general anesthetic in a hospital operating room.
The teen wouldn’t otherwise tolerate sitting still.
“He is looking to us for confirmation it will end at some point, [that] there will be a hospital trip so his sore toes will be fixed and he’s been asking for that for months now,” Stuart said.
“As a parent, to have a child in pain and be unable to help … is, I think, the single most devastating feeling.”
The family is now contemplating a trip to the B.C. Children’s Hospital emergency room – a move that the teen’s caregivers have indicated might be his next best option. There are no guarantees he will get treatment.
“I know what their emergency room is for and that to me seems like an abuse of the resource,” Stuart said. “But if its my last resort and it’s the only way I can get my child out of pain, I will do it.”