‘The cruellest thing in the world’: Mum’s fight after daughter’s death
The heartbroken mother of a 13-year-old who died in her sleep a week after being sent home from hospital following a seizure is fighting to change hospital rules.
Victoria
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A heartbroken mum whose daughter died in her sleep of a suspected epileptic episode is fighting to change hospital rules and have her death reclassified.
Anne Forbes’ daughter Lucia Berghella was found dead in her bed on April 4, a week after she was taken to the emergency room at Monash Clayton — and then sent home — following a “huge” seizure.
The 13-year-old had never been diagnosed with epilepsy but suffered “mini seizures” for about three years, during which her eyes would flutter and her head would shake.
Ms Forbes claims the Clayton hospital deemed the large seizure a one-off and reassured her it wouldn’t happen again.
A week later, Lucia died.
A coroner is now looking into the schoolgirl’s death, as is Monash University specialist Professor Terry O’Brien, who believes Lucia died of Sudden Unexpected Death in Epilepsy (SUDEP).
About 100 Australians die from the condition every year.
“SUDEP is such a huge issue because it mainly affects young people in the prime of their life, otherwise healthy who suddenly aren’t there anymore,” Prof O’Brien said.
“In many cases they do have a diagnosis of epilepsy … but Lucia had these little episodes for three years that were almost certainly seizures, then she had that major seizure a week before she died.”
Ms Forbes is now lobbying the coroner for Lucia’s cause of death to be changed from “unattained” to SUDEP, to help ensure no other family suffers the same “hell”.
“My daughter’s life counted,” she said. “She was just a really bright spark, full of life.
“I want her death put down as SUDEP … and I would ultimately really like the process for people presenting at hospitals with seizures to be changed.
She says she feels “let down” by the hospital and is pushing for scans and further testing to be made mandatory for all seizure patients, even if they don't have an official diagnosis.
“They didn’t do a single test on her … they said we think she had a seizure because of being on her iPad, and it’s not likely to happen again,” she said.
“For my child to be undiagnosed and then die a week later is just the cruellest thing in the world.
“It’s ruined my life. She was the most beautiful girl and I will always wonder if there was more that could have been done
After examining the coroner’s report, Prof O’Brien — who is Head of the Central Clinical School at Monash — now intends to write a letter voicing his support for reclassifying Lucia’s cause of death.
It comes as new research from Monash University, released this week, revealed the enormous cost of epilepsy in Australia.
It found there were more than 14,000 excess deaths of people of working age to 70 years and a massive $4.1 billion in direct healthcare costs.
Prof O’Brien said by improving the care, education and support for epilepsy sufferers by as little as five per cent, more than 800 lives could be saved.
Monash Health was contacted for comment.
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