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

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

June Bayley’s son Ben Mallia, who had a rare brain disease known as DRPLA, died from pneumonia in 1997. Around 18 months later his family, from Hargrave near Bury St Edmunds, discovered some of his organs had been removed without parental permission.

Addenbrooke’s Hospital bosses later admitted the youngster’s brain was taken for research, without the family being told, but said no other organs had been removed. His brain was later returned and his mother buried it with him.

A post-mortem report had stated Ben’s spinal cord was also removed from his body, but at the time, the hospital insisted it was a “typing error”.

Now aged 61, living across the Cambridgeshire border in Fordham and having therapy for a recent diagnosis of PTSD, Mrs Bayley said she has now finally felt strong enough to look at the report in detail.

Ben Mallia at Riverwalk School, Bury St Edmunds Picture: June Bayley (Image: Archant)

Concerned even more organs may have been removed during autopsy, the mum has vowed to find out what happened “once and for all”, and is due to meet with Addenbrookes’ current medical director next month.

“I just want to find out the truth. It states on the autopsy report that they removed more than just the brain. Give me the truth, I deserve that – I’m a mother, I’m his mum,” she said.

“I’d just like someone to be honest with me. Why did no-one try and find me to get permission?

“My marriages have broken down; I’ve been an emotional wreck. I’ve had nightmares, it’s a daily torment. It’s like never knowing, but you need to know, like Pandora’s box. I’ve now learnt I need to go back to be able to go forward.

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 Bayley (Image: Archant)

She added: “This is not about organ donation. This is about removing organs from someone that is deceased without acknowledgement.

“I hate the thought of my son being in a lab somewhere in jars.”

In 2004, seven years after Ben died, laws changed to ban the retention of organs without consent in the wake of the Alder Hey scandal, which saw the organs of 850 infants removed without permission between 1988 and 1995.

The previous law, the Human Tissue Act of 1961, stated that organs may only be removed during a hospital autopsy (post-mortem) if there was “no reason to believe” surviving relatives objected to the body being dealt with.

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 (Image: Archant)

Mrs Bayley, who said Riverwalk School pupil Ben had a “smile that would light up a room”, is planning to meet with current medical director Ashley Shaw in September to discuss what happened.

Mr Shaw said: “We are sorry to learn of this mother’s distress, and although we cannot publicly discuss individual cases, we are of course happy to review any records from the time and discuss this matter with her.”

Ben Mallia on a visit to Felixstowe two weeks before he died at 12-years-old, with his mum June Bayley Picture: June Bayley (Image: Archant)