Campaigning mother dies nearly 50 years after daughter’s medical negligence death

Martin Shipton

A mother who campaigned against medical negligence for nearly half a century following the death of her 12-year-old daughter has died at the age of 92.

Helenor Bye passed away nine months after going into hospital in Bridgend with a suspected bladder infection in 1977.

Her parents, Joan and Derek Bye, said that after routine kidney tests, Helenor became extremely sick – hallucinating and showing signs of aggression.

She was diagnosed with temporal lobe epilepsy – something Mr and Mrs Bye never accepted – and was given large doses of the drug Epilim (sodium valproate) to treat it.

Nine months later Helenor collapsed. She was taken to the University Hospital of Wales (UHW) in Cardiff, where her life support was switched off.

An inquest in 1980 ruled out epilepsy, finding that Helenor died of hyperammonaemia – a type of ammonia poisoning that caused all her organs to fail.

The coroner said it was genetic, but her parents remained adamant that because Epilim was wrongly prescribed, the condition was triggered.

An investigation by South Wales Police found no evidence of criminal malpractice despite the inquest hearing that the consultant who diagnosed epilepsy, the late Dr Trefor Jones, had suspected “Epilim toxicity”.

Dr Jones was also accused by the family’s counsel of failing to get a second opinion quickly enough – something he denied.

But it was information revealed to Mr and Mrs Bye decades after Helenor’s death that completely shattered their lives.

After thinking they had laid their daughter to rest in 1978, the couple received shocking news in 2001.

“We were informed by the University Hospital of Wales that all Helenor’s body organs – the whole body – had been stripped. Her brain had been removed,” Mrs Bye said at the time.

The letter from the hospital said the body parts were taken for “diagnostic purposes”.

The parents’ agony at losing their daughter was compounded by the fact that Helenor’s remains were scattered in eight hospitals. As they gradually recovered more of the remains, the Byes held new funerals for Helenor – four in total.

Mr Bye, who had given up his job to campaign with his wife, died in 2021. Like his wife, he spent decades arguing in vain for a public inquiry into his daughter’s death.

‘Dishonesty’

Fellow medical negligence campaigner Will Powell, who continues to argue for an individual duty of candour on doctors to tell the truth about the deaths of patients, said: “I first met Joan in 1990 following the negligent death of our 10-year-old son Robbie.

“By that time Joan had been fighting for truth, justice and accountability for the death of her daughter, Helenor, for 12 years.

“Joan informed me of the alleged dishonesty of the medical profession following a needless death. At the time I found it difficult to believe, but she was right.

“Joan’s campaign to find out the full truth regarding Helenor’s death took over her life as it does for all bereaved parents. Joan campaigned until the day she died.”

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