A Mississauga family says their loved one's hospitalizations could have been prevented if they were granted a visitor exemption so their mother could continue caring for her son.

Joy Carter told CBC News that before visiting was restricted due to COVID-19, she'd spend virtually every day and night by Quinn Carter's bedside at the Moir Family Centre for Complex Continuing Care in Etobicoke.

Carter said she's the only person who knows how to properly suction mucus buildup out of her son's airways

"Can you imagine you're constantly feeling as if you're drowning and you can't get that breath?" Carter said. "I said, 'Quinn you're not going to suffer.' Then I was asked to leave and I felt guilty."

Quinn, a 47-year-old former engineer, broke his neck in a motorcycle accident in 2016. It left him unable to speak and paralyzed from the neck down.

Joy Carter says she's spent every day by her son Quinn's bedside since he became a resident of the Moir Family Centre for Complex Continuing Care in 2018. But she was unable to obtain an exemption after the centre adopted a no-visitors policy due to the COVID-19 pandemic. (Supplied/Kent Carter)

"We had recognized very early on that his respiratory secretions were going to be a great danger for him," Carter said.

The family said Quinn has been rushed to hospital twice with low blood oxygen levels after Carter could no longer care for him due to the new visiting rules.

"No one else really learned how to look after the secretions effectively or understand how difficult they were to deal with, so we told [the care centre] we are afraid this is going to happen," Carter said.

Visiting suspended due to COVID-19

Quinn has been a resident since August 2018 of the 39-bed Moir Centre, which is operated by Trillium Health Partners.

Like other operators of Ontario health facilities, Trillium suspended visiting during the COVID-19 pandemic. The organization sent out a letter to patients and families on March 20 saying "limited" exceptions would be granted for "essential visitors" who are supporting patients who are at end of life, critically ill, under 18, or women giving birth.

Carter said she applied to be an essential visitor, but was denied because Quinn was in stable condition. The family appealed the decision.

Angel Carter, Quinn's sister, said her mother's care is the reason Quinn was considered stable.

"She just put everything into taking care of Quinn and it was really effective because he didn't need even supplemental oxygen," Angel said.

Quinn Carter has been hospitalized with low oxygen levels. His mother says if she had been able to care for him, that wouldn't have happened. (Submitted/Ken Carter)

Alison Freeland, Trillium's vice-president of quality, education and patient relationships, said in a statement the visitor policy is guided by Ontario Health and the hospital's infection prevention and control team. She said a family can appeal a decision, which includes an interview with the family, patient and care team.

"If a patient's status changes or deteriorates, an exemption will be reassessed. In this situation, the family is also welcome to submit another appeal," Freeland said.

She said there are two instances at the Moir Centre in which visitor exemptions have been granted.

Hospitalizations could have been prevented, sister says

Carter said after some training and spending 18 months with Quinn, she learned how to care for his respiratory needs so he could breathe comfortably without oxygen. She also learned how to help him sit up.

"Basically, I was doing everything in the end," she said. "The nurses always thanked me, though. And I said, 'It's OK ,because I know you are all so busy and I'm happy to do it because he's my son.'"

When the family learned Carter wouldn't be able to care for Quinn due to the visitor restrictions, they said they told staff he would wind up in hospital. The family said within days of Carter's absence Quinn was placed on oxygen.

Angel Carter, left, and her mother Joy Carter say Quinn's hospitalizations could have been prevented if Joy had been given a visitor exemption. (Andy Hincenbergs/CBC)

"If he's on any oxygen that's an indication that his lungs are not being kept clear, meaning the secretions are building up," Angel said.

He was taken to hospital by ambulance on April 7 due to "dangerously low blood oxygenation levels," according to Carter.

After four days, Quinn was sent back to the care centre, but was again rushed to hospital on April 17 in even worse condition, the family said.

He's currently in the intensive care unit, and as of Wednesday, no longer needed a ventilator. The family said Quinn unnecessarily took up intensive care capacity, which has been a concern during the pandemic.

"It could have been prevented," Angel said. "Nothing is black and white and you always have to look at specific cases and no one was looking at it."

Freeland said Moir Centre staff are experienced and trained to care for all patients' needs and said family members are involved in decision-making.

"When welcoming a patient into Moir's care, a full patient assessment is done, in conjunction with their family, to ensure they meet admission criteria and that their needs can be met by the centre's model of care," she wrote.

'A devastating issue for a lot of families'

A national association that supports people with intellectual disabilities and their families said many others across Canada are experiencing what the Carter family is going through.

"It's a devastating situation for a lot of families," said Krista Carr, the executive vice president with the Canadian Association for Community Living..

Carr is part of the federal government's COVID-19 disability advisory committee, which is offering guidance on a number of issues, including visitor policies, although Carr notes it's a provincial issue.

The Canadian Association for Community Living’s executive vice-president Krista Carr is part of the federal government's COVID-19 disability advisory committee. (Supplied/Krista Carr)

She said separating loved ones from their families causes a lack of socialization and support for the person in care, and is difficult for families because they can't see for themselves whether their loved ones are doing well.

Carr said she knows of a few cases in which families received a visitor exemption, but explained it's very rare.

"The situation normally has to be considered quite dire."

The Carters say Quinn — who has tested negative for COVID-19 — is collateral damage of the pandemic

"He's suffering," Carter said.

The family is planning to file a second appeal and said since Carter isn't able to suction out Quinn's secretions as she had been, they are pleading with doctors to perform a procedure that clears out his airways.

"Otherwise he might not survive another trip going there and back to the ICU," Carter said.

"We're very, very scared."