Mum from Fordham vows to continue battle to 'get to the truth' of son's missing organs after meeting with hospital bosses
A mum has vowed to continue her battle to 'get to the truth' of her son's missing organs after meeting with hospital bosses this week.
June Bayley claims her son, Ben, had his organs, including brain, spinal chord, heart, liver kidney and spleen removed, without permission, following his death in 1997.
Twenty three years later, and after recently being diagnosed with Post Traumatic Stress Disorder, she says she is renewing her quest for 'truth'.
Ms Bayley, who lived in Hargrave, near Bury St Edmunds , at the time, met with hospital bosses on Monday.
But she said the one-hour meeting 'failed to provide any answers'.
"There were no medical notes for starters. The only evidence was an autopsy report which I provided, which proves the organs were removed," said Mrs Bayley, who now lives in Fordham, Cambridgeshire.
"I am not happy with the responses so far and will be seeking legal advice. I want the truth.
"I have also written to my MP, Liz Frazer, who says she will be taking it up with health secretary, Matt Hancock.
"I think the hospital is hoping I will just go away, but I won't."
Ms Bayley, 61, says she has 'spent decades' turning over events in her mind about what happened back in 1997.
She abandoned earlier attempts to find out more as as she found it 'overwhelming'.
Her recent diagnosis for post traumatic stress disorder, for which is now also undergoing therapy, and which she says related to thoughts about her son, has spurred her on to try again.
Ben Mallia, a former pupil at Bury St Edmunds, Riverwalk School, suffered a rare brain disease called DRPLA and died of bilateral bronchopneumonia in August 1997.
Eighteen months later, June says she learned from an autopsy report, organs had been taken after his death, which she believes were for research, without permission.
Addenbrooke’s Hospital, in Cambridge, admitted the youngster’s brain was removed for research but say no other organs were taken.
The hospital returned Ben’s brain – which June then buried with him.
During her early quest for answers, in 2004, Ms Bayley was also among 2,000 families from across the country – sparked by the Alder Hey organs scandal – who brought a High Court action against the NHS, claiming body parts of their loved ones had been removed without their consent.
June, said: “I have so many questions. When I asked these questions before, everybody seemed to pass the buck and blame everyone else.
"I have got nothing to lose. My son is dead – I won’t get him back. Nothing will change that. But I could find out the truth.
"I want to see the medical notes."
A spokesperson for Cambridge University Hospitals NHS Trust: "The Trust’s Medical Director, Dr Ashley Shaw, met with Ms Bayley at Addenbrooke’s Hospital.
"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 Ms Bayley."