Suffolk mum believes note proves son's spinal cord was removed

During a visit to Ipswich Coroner's Court on Wednesday (June 29), she was shown a handwritten note sent by then West Suffolk coroner Bill Walrond to pathologist Robin Moseley suggesting that Ben Mallia’s spinal cord was "retained".

The note from West Suffolk coroner Bill Walrond, which Mrs Bayley said suggests Ben's spinal cord was 'retained.' (Image: JUNE BAYLEY)

The pupil at Riverwalk School in Bury St Edmunds died from pneumonia in 1997 and had the rare brain disease Dentatorubal-Pallidoluysian Atrophy (DRPLA), which causes involuntary movements, mental and emotional problems and a decline in thinking ability.

Around 18 months after he died, his family, who lived in Hargrave, discovered that some of his organs had been taken without parental permission.

Bosses at Addenbrooke's Hospital in Cambridge admitted Ben’s brain had been taken for research but insisted that a post-mortem report at the time stating his spinal cord was also removed had been a "typing error".

Ben Mallia was a pupil at Riverwalk School (Image: JUNE BAYLEY)

Mrs Bayley, 62, who now lives in Fordham, Cambridgeshire, said: “My family and I have suffered enough. I am glad the truth has come out, but at the same time I should have been told this from the very beginning.”

However, Dr Ashley Shaw, medical director with Cambridge University Hospitals Trust (CUH), which runs Addenbrooke's, said: “Ms Bayley has our continued sympathies for the devastating loss of her son Ben.

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

"This was returned to Ms Bayley in 2001 by 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.

“The note suggesting the spinal cord had been retained was a transcription error and later corrected. No spinal cord was retained. Nothing else was removed or retained and nothing has changed since our correspondence with her lawyers in 2001.”

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.