Joni Urban is sick. Her 2-year-old son was the victim of a horrific accidental death, at age 11 months.
She is asking why she, her husband and other family members were not told what happened.
Her child was on a vacation with his father, playing in the garden of their Ontario home and getting splashed. When it became apparent the splashing was not going away, the parents decided to look closer. And when Urban discovered something wasn’t right with their son’s leg, they rushed him to Children’s Hospital of Eastern Ontario.
The child was not moving or moving legs – he was not moving at all.
“I called the hospital and told them what had happened,” Urban said. “They said they didn’t have any information.”
There was no investigation or thorough investigation into what happened to their son. In fact, when Urban told the nurse her son would be in need of surgery within the next 24 hours, the nurse had no idea what the surgery would be or when it would be performed. She did not have knowledge of what procedures were done or the name of the pathologist who did the autopsy.
“I was just told there were no results,” Urban said. “It was extremely frightening.”
Her own son was dead. He was never returned home, even after this gruesome accident.
Urban, a registered nurse, is a strong advocate for transparency and accountability in our health care system. She is angry, hurt and extremely disappointed at how her family was treated. She was told at one point there was no point in investigating or talking about what happened.
“It is an outrage that no one was ever held accountable or held responsible for this and the outcome was not reversed,” Urban said. “I can understand their desperate wish for privacy and no one wanting to expose them to further criticism of their private life, but I do understand that they did not have any ability to effect that. We are all human and have feelings.”
Joni Urban and her family strongly believe that parents who have lost a child should be informed of what happened, in the best interest of their child. They feel compelled to speak out and bring about needed changes in a system that is bereft of meaningful communication and transparency for grieving families.
The family contacted me about what happened to their son, in hopes of helping other grieving parents who are upset with how their child died.
Doctors are not required to tell parents what happened. At the request of the parents, physicians are required to release information when death is suspected. Medical examiners have discretion about whether to release information to the parents. Physicians are not required to release information on a child’s cause of death.
“Our experience was inadequate and insufficient. Something had to change,” Urban said. “I wish there was a way to make it easier for parents who lose a child to explain how that child died so that others may never suffer the same heartache.”
Urban says she doesn’t know how much longer she can be in this place.
“I want to provide answers, not speculate,” Urban said. “I’m uncomfortable talking about my son. I would be better off trying to discover the truth and focus on trying to be strong and provide support for my family.”
Urban says she cannot think of many things worse than losing a child. She wants to see changes in Ontario and across Canada in how medical examiners communicate with parents after death.
Urban and her family believe others – parents who have lost children and other family members – should know what happened in their child’s autopsy and what happened to them after they died.
“I have always advocated for transparency and openness in everything, but after this unimaginable experience, my commitment to transparency and openness has increased tenfold,” Urban said. “Why shouldn’t we know the full story?”