It was Gail Schultz’ greatest fear that an epileptic seizure would take the life of her middle daughter Carney, who was born with severe intellectual and physical disabilities.
On April 21, 2015, 28-year-old Carney Schultz was found dead in her bed by her carers at a Figtree group home, run at the time by the Department of Family and Community Services.
Carney died just five hours after suffering a seizure lasting for more than eight minutes, yet a subsequent autopsy could not determine the cause of death.
On Tuesday Mrs Schultz, and her two daughters Kelsey and Teagan, sat through an inquest at Port Kembla Coroner’s Court into the cause and manner of Carney’s death that day.
The inquest, before Deputy State Coroner Derek Lee, heard that a disability support worker not trained in administering Carney’s seizure medication was working a solo night shift on the night/ morning in question.
Counsel assisting the coroner Donna Ward told the court that at 3.20am on April 21, 2015, the worker heard Carney shaking her bed.
Upon checking on her, she found Carney in violent convulsions and stayed with her until she recovered from the seizure.
Two workers who started their shifts later that morning both saw Carney alive at 6am and 8.20am. Then, at 8.50am, she was found facedown in her pillow, her face blue.
Ms Ward said despite CPR by staff, and efforts by attending paramedics, Carney could not be revived.
Carney’s older sister Kelsey read an emotional statement to the court about a sister whose “smile could brighten the darkest of days”.
“Carney was born at 34 weeks and was in and out of hospital for 14 months and at this time mum was told to take her home, she would be a vegetable,” she said.
“That was the day mum made a promise to Carney. She made the promise she would fight for her, be her voice and do everything in her power to give Carney the best quality of life possible.
“… Mum’s worst fear has always been that a seizure would take Carney from us, the ‘what ifs’ will forever plague us.”
During the inquest, Ms Ward raised questions about staff training at the Outlook Drive facility, now run by House With No Steps.
“The issues are more complex than just a failure to train staff to administer the drug,” she said.
“There was a lack of training on how seizures affected her, and how to know what to look for when she had finished a seizure.’’
Ms Ward said according to Carney’s epilepsy management plan, developed by her treating neurologist, medication was to be administered after a seizure lasted three minutes.
If a staff member trained in administering the drug was not available, an ambulance was to be called after five minutes.
In a 2016 report to the NSW Ombudsman into Carney’s death Professor Ernest Summerville, director of the Comprehensive Epilepsy Service at Prince of Wales Hospital, said he doubted it would have made a difference if an ambulance had been called.
In the report he said paramedics would likely not have administered medication or transported Carney to hospital as her seizure had self-terminated.
However, under cross examination in court on Tuesday by counsel for the family Mark Davies, Prof Summerville said had paramedics been called and transported her to hospital for observation her “death may have been averted”.
However he added: “I think it’s unlikely that early seizure directly caused the death and in a way may have been coincidental”.
The Coroner heard that the autopsy listed coronary heart disease and positional asphyxiation as possible causes of death.
However Prof Summerville said with Carney’s history, sudden unexpected death in epilepsy (or SUDEP) could not be excluded.
The Coroner will release his findings on Friday.