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Royal Hobart Hospital has delayed emergency surgery to a woman with a life-threatening brain tumour whose long-ago infertility treatment, which potentially exposed her to Creutzfeldt-Jakob disease, would have compromised expensive neurosurgical instruments.
Susan Cockerill, 69, of Lindisfarne in Hobart, had been scheduled for brain surgery at 8am yesterday.
But she and her daughter, Elizabeth Sheppard, were told shortly before the operation by “empathetic’’ neurosurgical staff that the operation had been cancelled.
The hospital acted because expensive surgical and imaging instruments — some of them potentially only single-use — needed to be quarantined or destroyed afterwards in line with national infection-control guidelines relating to potential effects for subsequent surgical patients.
Mrs Cockerill is at low risk of developing Creutzfeldt-Jakob disease from years of fertility treatment in the 1970s and 1980s on Australia’s first computerised medical program, the Australian Human Pituitary Hormone Program.
‘The upshot is that Mum is first up” for surgery tomorrow, Mrs Sheppard told The Australian yesterday. “The hospital has cancelled all other surgery for that day as it may take hours. And if she deteriorates in the meantime with a seizure, they will operate immediately, or she will die.”
Mrs Sheppard remains concerned that the surgery on the orange-sized tumour — discovered only after a brain scan following prolonged delirium and disorientation after knee-replacement surgery on Wednesday — was “delayed due to discrimination”.
“If I had not pushed and got on the phone to the CJD Support Group Network and other advocates I don’t think anything would have been done,” she said.
Mrs Sheppard said the tumour, believed to be benign, was surrounded by a “massive oedema” or dangerous, pressure-inducing fluid for which her mother remained on medication.
In 1992, Mrs Cockerill was the co-founder in Tasmania of one of the first support groups for Australians at risk of the uniformly fatal CJD. She was among more than 2100 Australians treated with human pituitary gonadotrophin (hPG) for infertility or with human growth hormone (hGH) for short stature on the Australian Human Pituitary Hormone Program.
CJD is incurable and untreatable and is one of a family of “prion” diseases, which have incubation periods of more than 40 years.
Consultations were brokered yesterday by CJD support group director, Suzanne Solvyns, between infection-control teams at Royal Hobart Hospital and Westmead Hospital in Sydney — where a similar situation arose several years ago — as well as professor Colin Masters, co-director of the Australian CJD registry and a member of the CJD incident panel. Mrs Solvyns said she “connected everyone” yesterday and believed some loan instruments had been located from a company that deals with soon-to-be out-of-date instruments.
She acknowledged that “it does take time” to organise for replacement or “loan” surgical instruments. “But when it’s life-threatening, that delay is crucial and arrangements can always be made while the operation is in progress,” she said.
A spokesman for Royal Hobart Hospital said although individual patient treatment could not be discussed, “in a situation where a patient may be at risk of CJD, infection-control protocols to ensure the safety of all other patients are a vital consideration”.
That included that “equipment used on such a patient cannot be re-used and must be destroyed”, the spokesman said ... See MoreSee Less
A team of researchers from the Case Western Reserve University Medicine School have designed and synthesized the first artificial human prior. This has been considered as a dramatic development that has been taken efforts to combat a devastating form of a brain disease that has been till now eluded....
The CJD International Support Alliance were very honoured to be able to present to over 300 scientists and research who attended Prion 2018 in Santiago de Compostela the voices and faces of those personally affected. The audience was very touched by the stories that family members of the CJD Association of Spain contributed to this presentation and it was wonderful to meet these very brave family members who told their very personal stories. Photos below ... See MoreSee Less