Dev and Jana
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‘I am concerned that people with an intellectual disability or autism are not treated with equal regard or care in hospitals.’
Jana’s son Dev has Williams syndrome, is autistic and has a mild intellectual disability.
In Jana’s submission, she told us Dev was seven years old when he had a rectal prolapse. The first time his parents took him to the children’s hospital, the doctor on duty pushed the mucosa back in. Some days later, however, the mucosa was pushed back out and he went into the hospital again. Jana said the doctor pushed it back in again. He told her that, with children, prolapses usually resolve spontaneously. He said that surgeons only take action in serious cases and that the results were not great. He said there was very little they could do. ‘It was obvious they were trying to discourage me taking this any further,’ said Jana.
Jana explained that Williams syndrome means Dev’s cells make less elastin, which helps tissue within the body maintain or resume its shape. So when she was told that the issue would resolve itself it made no sense at all to her. However, she decided to put her trust in the doctors and took Dev home to ‘wait it out’.
Jana described the days and weeks that followed as a nightmare. The prolapse was out 24 hours a day and getting bigger. Dev was constantly straining, lying on the floor. He could not go to school, as he was incontinent and couldn’t sit down. He couldn’t go in the car and his parents couldn’t leave the house. There were faeces all over the floor and they spent their days cleaning the house. Jana and Dev’s dad took weeks off work to stay with him.
Jana contacted a private rectal surgeon to see if they could help, but they didn’t respond. They finally returned to the children’s hospital, where the doctor on duty said he would speak to a surgeon. It was clear to her that each doctor assumed her child was non-verbal. But, Jana says, ‘My son knew exactly what was going on each time but was withdrawn due to distress. They did not always ask Dev’s permission to physically examine his rectum and sometime did it while he was asleep. He would wake in extreme distress each time’.
They finally met briefly with the rectal surgeon, who said he could definitely help. The doctor operated on Dev one and a half weeks later.
The surgery was a fantastic result, but Jana still wants to know why it took so long for the doctors to help Dev.
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.