Every time they walk by the bedroom of their 30-year-old daughter, Shavonne, at their home in Westville, N.S., Wesley and Sheila Lees feel heartbreak from her loss and the way she died.
The room is how she left it, with a cherished doll on her bed and posters of her favourite movie, Frozen.
“We know nothing brings her back. But we also know that she can be the person to create change,” said Sheila Lees.
The couple did not realize how ill their daughter was when she told them she wasn’t feeling well and needed to go to the emergency room at the nearby Aberdeen Regional Hospital in August 2023.
Unbeknownst to them, Shavonne, who had physical and mental disabilities, had contracted sepsis, a life-threatening condition caused by the body’s overreaction to infection.
She died the next day, and now — more than a year later — her parents say they’re still trying to understand what went wrong and what needs to change to prevent similar tragedies.
Lees said they arrived at the hospital in New Glasgow at 4:30 a.m. and her daughter spent nearly 16 hours in the emergency room. Shavonne lay on a stretcher in a room across from the nurses’ station and was hooked up to a cardiac monitor, Lees said, who added that it didn’t seem like her daughter’s illness could be fatal.
“We trusted the medical professionals. Nobody was coming in and out of the room telling us anything,” she said in a recent interview.
Shavonne was finally moved to intensive care but died there on Aug. 28, 2023.
Since then, Lees has spent hours combing through her daughter’s medical charts to try to understand what happened, and has grown even more frustrated after identifying what she sees as gaps in care and miscommunications among staff.
“We watched our daughter die. And we didn’t know that sepsis was taking over her body,” Lees said.
The family is also raising serious concerns about how Shavonne was treated. They believe she suffered discrimination as a person with a mental disability.
“The rare occasion where staff came in the room, they wouldn’t even speak to Shavonne,” said her 25-year-old brother, Austin, who was also by her side. “Not even something as simple as a ‘Hi, how are you doing?'”
Questions appeared to be directed at other family members, but she would have been able to speak for herself, he said.
“I think that is discrimination. It might be unconscious,” he said, adding he is still feeling a mixture of anger and sadness.
Nova Scotia Health has completed a quality review of the case, which it shared with the Lees family and offered condolences.
“We would like to express how sorry we are about Shavonne’s and your family’s experiences while in our care,” said the letter dated May 31.
The review, led by health professionals, was done to understand what happened and find ways to improve, according to a statement from Nova Scotia Health.
It makes seven recommendations including a review of the model of care and patient flow in the emergency department at Aberdeen Regional Hospital, as well as providing ongoing education as part of Nova Scotia Health’s equity-based approach.
It also suggests introducing strategies to support implementing best-practice care of sepsis.
However, Sheila Lees, who has also filed a complaint with the College of Physicians and Surgeons of Nova Scotia, said she doesn’t know what, if anything, has changed.
She met with Tim Houston, the MLA for the area in February, received a letter from the minister of health and wellness last October, and has had a number of meetings with health officials.
Nova Scotia Health said it is committed to working closely with the family and that “physician and operational leaders have been and continue to meet with the family regularly to share updates, listen to their concerns, and provide answers to their questions.”
The aim, said the health authority, is to “ensure they remain informed and involved as we work together with the goal of improving patient care.”
‘Fantastic’ person who kept the family connected
Lees is not satisfied with the response from the province, and the family is determined to carry on campaigning in honour of Shavonne, who they say was a “fantastic” person.
They describe her as the family secretary, keeping everyone in contact with heartwarming texts and voice messages.
Lees acknowledged there is continuing dialogue with health officials, but added she wants to see action. One step the family has called for is signage in emergency rooms explaining what sepsis is, so patients have more awareness about it.
“I never want another family to experience that,” said Lees. “I’m not seeing that change. Fourteen months is a long time.”
