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Mum demands hospital hands over medical records in fight for answers over son’s organs

June Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death aged 12 Picture: DENISE BRADLEY

June Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death aged 12 Picture: DENISE BRADLEY

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A mum has vowed to get hold of her young son’s medical records to find out “once and for all” if more of his organs were removed for tests after he died.

Ben Mallia, aged six, with his younger brother Scott. Ben died from pneumonia and a rare brain disease at 12-years-old. Picture: June BayleyBen Mallia, aged six, with his younger brother Scott. Ben died from pneumonia and a rare brain disease at 12-years-old. Picture: June Bayley

June Bayley, from Hargrave near Bury St Edmunds, fears she is “not being taken seriously” by Addenbrooke’s Hospital, at which doctors removed her son Ben Mallia’s brain after he died of pneumonia and a rare brain disease in 1997. Last month, having been diagnosed with PTSD following years of grief and trauma, the mum reignited her fight for answers more than two decades after her son’s death.

Desperate to find out the truth, Mrs Bayley met with Addenbrookes’ current medical director Dr Ashley Shaw last night. But she says she was left “disappointed” after not being satisfied by the trust’s responses to her questions, mainly over why her son’s autopsy report states his spinal cord was also removed without her permission.

Trust bosses said their position remains the same as it was in 2001, that, according to their records, no other organs were retained at the time of Ben’s death. At the time, it was put down to a “typographical error”. A spokeswoman for Addenbrooke’s said Dr Shaw reiterated the trust’s apology to the family for removing the youngster’s brain and retaining it after the post-mortem.

“I really don’t think I’m being taken seriously,” said Mrs Bayley, now 61. “I think they think I’m going to disappear this time, but I’m not.

Ben Mallia, on a visit to Bury St Edmunds Police Station with his younger brother Scott. Ben died from pnuemonia and a rare brain disease at 12-years-old. Picture: June BayleyBen Mallia, on a visit to Bury St Edmunds Police Station with his younger brother Scott. Ben died from pnuemonia and a rare brain disease at 12-years-old. Picture: June Bayley

“I’ve got it in black and white that the spinal cord was removed, it’s in the autopsy report. My boy’s organs were taken and I just can’t see how that can be a ‘typographical error’, it’s on a legal document signed by a professional.”

Hospital bosses admitted to retaining Ben’s brain around two years after it was removed in 1997. In 2001, it was returned to Mrs Bayley so it could be buried with her son.

MORE: ‘I must know the truth’ – Mum’s plea after son’s organs removed without permission

Now Mrs Bayley has tasked Addenbrooke’s with providing all of Ben’s medical records so she can find out once and for all if more organs were taken from the 12-year-old after he died.

June Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death aged 12 Picture: DENISE BRADLEYJune Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death aged 12 Picture: DENISE BRADLEY

“I said I want all of his medical records and everything they’ve got in the lab on my son. I feel that’s the only way I’ll get to the truth,” she added.

Now living across the Cambridgeshire border in Fordham, Mrs Bayley’s local MP Lucy Frazer is writing to health secretary and West Suffolk MP Matt Hancock, and Addenbrooke’s Hospital, about the case.

A spokeswoman for the Cambridge University Hospitals NHS Trust, which runs Addenbrooke’s, said: “The trust’s medical director, Dr Ashley Shaw, met with Mrs Bayley at Addenbrooke’s Hospital on 7 September 2020.

“He repeated the apology regarding the retention of her son’s brain to the family following the post mortem in 1997. Ben’s brain was returned in 2001 and Dr Shaw repeated the trust’s previous assurances that, according to our records, no other organs were retained at the time.

“The position remains unchanged from that in 2001.

“We are very sorry for the distress that this continues to cause Mrs Bayley.”


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