For Cinzia Rossi and Daniel Glubis, no words can describe the loss of their “sunshine,” their “angel.” Eight-year-old Jaxon died of hematoma — a brain bleed — on Dec. 28, 2021, at the BC Children’s Hospital after emergency surgery failed to save him.
The Fraser Health Authority has repeatedly declined to comment on Jaxon’s care to Global News, citing privacy laws, despite having received written authorization from his parents to do so. Rossi and husband Daniel Glubis signed a consent form on June 1 for his medical records to be released to Global News.
The authority’s silence has compounded the Abbotsford family’s grief and trauma, said Rossi, who wants the media to press for answers on what happened to her son.
Jaxon’s death came one day after he was sent home from the Abbotsford Regional Hospital without the CT scan his mother requested. She said Jaxon told the doctor on Dec. 27 that he couldn’t feel the right side of his head, but the doctor was confident a CT scan wasn’t necessary.
“It’s been incredibly hard. It took me a long time to get to this point where I could share his story,” said Jaxon’s mother, Cinzia Rossi, nearly one week after she first told Global News about Jaxon.
“He’s my light, my sunshine. He deserves a voice, he deserves to be heard.”
“This isn’t about us anymore, this is about Jaxon and this is about the future children of Canada,” she explained. “I’m flabbergasted that Fraser Health continues not to release our information to you guys at our request.”
On Thursday, B.C. Health Minister Adrian Dix said the health authority would not heed authorization from Jaxon’s parents.
“It wouldn’t be our role to give that information to Global BC,” he said. “That information would be provided with the family.
“Of course it’s the right of the family — it’s their information — to do with that what they will.”
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He said staff at the Abbotsford Regional hospital spoke with the family this week and are expected to provide Jaxon’s information next week. Dix further suggested that Fraser Health may be declining to speak with media and that his parents have triggered an independent review through the Patient Care Quality Office.
While Dix claims it’s not the province’s role to release Jaxon’s details to the media, freedom of information and privacy advocate Jason Woywada points out that patients regularly sign consent forms to have their information released to journalists for “positive” news stories.
When “new medical procedures” are publicized, for example, patients interviews containing personal information are often facilitated by governments and health authorities, he explained.
“Health authorities regularly facilitate the transfer of information from a patient to a third party on an ongoing basis. This is well-established,” said Woywada. “They are cherry-picking and choosing when to create barriers for somebody to access information and when to enable it.”
“Data portability” is a key principle of freedom of information, he added, and the way Jaxon’s case has been handled “erodes public trust.” The BC Freedom of Information and Privacy Association, which he leads, will be investing its “legal research dollars” to examine whether an entity must transfer information to a third party if authorized and requested to do so.
Since Jaxon’s parents shared his story with Global News, they said they’ve received an influx of calls, messages and emails from B.C. parents who have experienced similar frustrations with the health-care system. Some date back to 1997, said Jaxon’s father.
“It just feels like the wheels have been spinning but there hasn’t been any change,” he told Global News. “I feel a lot of parents that have lost children are really afraid to speak out.”
After Jaxon died, no one in the medical system reached out to check on the family or offer mental health support, Glubis added. The Fraser Health Authority has confirmed that because Jaxon died at the BC Children’s Hospital, they were unaware he had died until last month.
Glubis said it should not have taken a published article for Fraser Health to reach out to them, and it’s “really upsetting” the authority has not yet released Jaxon’s information.
“It makes me feel that they are hiding a portion of the story … It really hurts my heart from the core of my body that they’re not disclosing the full information to those that we would like it disclosed to.”
Rossi said she feels “beyond broken, beyond shattered,” and like the other families who have reached out to them is “rooting for change” in what she describes as a “flawed system” that left Jaxon behind.
Editor’s Note: This story was updated from a previous version which incorrectly stated Jaxon’s parents signed a consent form on May 31. It was signed on June 1.