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Mum’s anguish continues over what happened to son’s organs after death

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

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

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A mother haunted by what happened to her son’s organs after his death has expressed shock after it emerged small parts of his lungs, liver and pancreas were also removed during his post-mortem examination.

Ben Mallia at Riverwalk School, Bury St Edmunds. Ben died from a rare brain disorder at 12-years-old. Picture: June BayleyBen Mallia at Riverwalk School, Bury St Edmunds. Ben died from a rare brain disorder at 12-years-old. Picture: June Bayley

Ben Mallia’s mum June Bayley, from Hargrave near Bury St Edmunds, has been fighting to find the truth about the removal of her son’s organs after he died of a rare brain disorder in 1997.

She renewed her quest for answers earlier this summer, after battling undiagnosed PTSD while bringing up the rest of her children over two decades. The 61-year-old discovered Addenbrooke’s Hospital had removed Ben’s brain without parental permission around 18 months after he died.

An autopsy report and a second, separate document states his spinal cord had also been retained – but hospital bosses have continued to put this down to a “typographical error”, insisting it was never taken.

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

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

The Human Tissue Act of 1961, which applied at the time, stated organs may only be removed during a post-mortem if there was “no reason to believe” surviving relatives objected to the body being dealt with.

Now, another document seen by this newspaper reveals not only was his brain removed, but also small parts of his lungs, liver and pancreas.

Medics say these were used for microscopic examination at the time of the post-mortem, and say nothing else was removed or retained.

Hospital bosses say slides containing tiny pieces of tissue were returned to Mrs Bayley in 2001, along with Ben’s brain – four years after he died.

June Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death from a rare brain disorder. Picture: DENISE BRADLEYJune Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death from a rare brain disorder. Picture: DENISE BRADLEY

His mother claims she only came to know about this latest development after asking for her son’s lab samples and added: “I was promised nothing else had been removed. Now this has come to light. What else don’t I know?

“This has destroyed me for 21 years – no wonder I have PTSD.”

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

Current medical director Dr Ashley Shaw said he has met Mrs Bayley twice in the last two months.

“We were able to talk through the same information that had been provided by the trust in 2001, at the time of the National Organ Retention Enquiry,” he added.

June Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death from a rare brain disorder. Picture: DENISE BRADLEYJune Bayley, of Fordham, fighting to find out what happened to her son, Ben Mallia's organs after his death from a rare brain disorder. Picture: DENISE BRADLEY

“As previously stated, the only organ retained after her son’s post-mortem here, was the brain.

“This was returned to Mrs Bayley in 2001 via funeral directors, together with all the paperwork relating to this case, and a number of slides containing tiny pieces of tissue from the lung, liver and pancreas used for microscopic examination at the time of the post-mortem.

“For the avoidance of any doubt, nothing else was removed or retained and nothing has changed since our correspondence with her lawyers in 2001.”

He added: “Mrs Bayley has our continued sympathies for her devastating loss.”

Unhappy with the hospital’s response, the 61-year-old says she is now planning to take further action by raising her case with health watchdog the Care Quality Commission.

She is already in touch with her local MP Lucy Frazer in Fordham, Cambridgeshire, where she now lives.

Ms Frazer has written to Addenbrooke’s Hospital and health secretary Matt Hancock asking for clarity on the situation.

Mrs Bayley also claims medics told her during recent meetings that the coroner had ordered the retention of her son’s organs – but she has a letter from said coroner stating he gave “no specific authority for the retention of anything”.

The letter adds that there is “no way he would seek to dictate to the pathologist how to do his job”.

Addenbrooke’s did not respond directly to the above claim.


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