Our son was a determined, bright, and deeply loved eleven-year-old boy who dreamed big, saw possibility everywhere, and refused to live within the limitations set by others. He had a complex but stable neurological history and had received long-term care from BC Children’s Hospital. When we moved to a different location in the province, his medical records did not move with us; instead, they remained locked inside a different health authority’s medical record system. When he suddenly developed severe neurological symptoms, the emergency team at the local hospital treated him without access to the history that defined his risks. For nearly five hours they worked without the information they needed, and by the time his full history was obtained by phone, it was too late. Our son had already slipped into a coma and required breathing assistance. He suffered catastrophic hydrocephalus and died 10 hours later. His death was a failure of fragmented systems, blocked information, and the absence of real-time access to essential medical records.
We carry the truth that our son’s death was the direct result of non-interoperable health data systems. His story shows how BC’s fractured digital infrastructure endangers patients and leaves clinicians without the tools they need to provide safe, timely care. His experience makes it clear that BC’s current health data environment is causing harm, and in his case, it cost him his life. If our healthcare system learns anything from his death, it must be that BC’s health data infrastructure needs strengthened interoperability, the elimination of data blocking, guaranteed meaningful patient and practitioner access, and governance shaped by lived experience. Had these measures been in place, our son, who dreamed big, loved deeply, and had so much life ahead of him, might still be alive. I speak this in his name, and in the hope that no practitioner and no family will ever endure what we have.