Mum forced to bury her 12-year-old son for a THIRD time after a ‘devastating’ move by doctors
A mother has told how she is facing the trauma of having to ‘bury’ her son for a third time as she battles hospital chiefs to find out the truth about medical tests carried out on him before his death at the age of 12 .
June Bayley has searched for answers for more than twenty years after the death of her son Ben from a rare brain disease.
The youngster was buried in 1997, but two years later she discovered his brain had been removed during an autopsy so medical research could be carried out into the rare condition that ended his life.
A second funeral was held and now the 65-year-old fears she will have to hold a third service after she was told her son’s DNA could still be held in a London hospital.
June said: ‘It’s not something anyone should have to go through when a mother has to bury her child, but a second burial is worse. Now I would have to go through a third funeral if I can get back the DNA samples taken without my consent.
βI just want my whole son back and have him all in one place. I want to put a stone on his grave so that no one else can take anything.β
June Bayley has searched for answers for more than twenty years after the death of her son Ben from a rare brain disease
Ben (pictured) – was born with the rare brain disease Dentatorubal-Pallidoluysian Atrophy, having genetically inherited it from his father Francis, who died from the same condition aged 32
Mama June said, βI just want my whole son back and have him all in one place. I want to put a stone on his grave so that no one else can take anything.”
Her son Ben was born with the rare brain disease Dentatorubal-Pallidoluysian Atrophy (DRPLA), after genetically inheriting it from his father Francis, who died from the same condition at the age of 32. Patients have a life expectancy of between 8 and 16 years.
A funeral service was held after Ben died in 1997, but two years later she was told his brain had been removed during an autopsy so it could be examined by specialists trying to find out more about the condition.
Samples of parts of his other organs were also removed and in 2001 they were returned to Mrs Bayley, who lives in Ely, Cambridgeshire. A second funeral took place that same year.
βI had no idea at the time that my son’s brain had been removed when his body was returned to us. He was not an organ donor and I had not consented to his removal. I had told the doctors that I did not want his organs removed, especially his brain.
‘It was devastating to know that parts of him had been taken without my consent.’
Bosses at the world-famous Addenbrooke’s Hospital in Cambridge later admitted the child’s brain had been removed for research.
Ms Bayley, who has three adult children, is now embroiled in a battle to secure the return of DNA samples (believed to be skin or blood cells) from Guy’s Hospital in London.
After Ben (pictured) died in 1997, a funeral service was held, but two years later she was told his brain had been removed during an autopsy.
They also sent back slides with samples from other organs.
Ms Bayley, who has three adult children, is now embroiled in a battle to secure the return of DNA samples – believed to be skin or blood cells – from Guy’s Hospital in London.
She will meet with hospital leaders next month where she will push for the return of the microscopic cells.
‘It may not sound like much, but it means so much to me and my family. All I ever wanted to know is that my son was completely buried and no parts were missing, she said.
‘It’s been a bit of a crusade, but I will fight for all my children. If necessary, I will take legal action to get them back. They belong to Ben and should be with him and not in some genetic lab.
“When I get them back, they’ll be with Ben and I’ll make sure there’s a stone on his grave so no one can ever take anything from him again.”
Mrs Bayley believes her son’s cause of death is so rare that genetic specialists wanted to examine his DNA to learn more about the disease.
She contacted University College Hospital in London earlier this year hoping they could provide answers, as she believed her son had been registered with their genetics unit since 1992.
Mrs Bayley is convinced her son’s cause of death is so rare that genetic specialists wanted to study his DNA to learn more about the disease
A hospital spokesperson denied they were involved.
A spokesperson for University College London Hospital said: ‘Cambridge University Hospitals recently made us aware of Ms Bayley’s concerns.
‘We tried to trace our records from 33 years ago but found no evidence of tissue being retained at UCLH.’
June added: “I know nothing will ever bring my Ben back, but I still want to know the truth about what happened and will keep fighting until he is finally completely laid to rest.”
A spokesperson for Guy’s and St Thomas’ NHS Foundation Trust said:
βWe apologize to Ben’s family for any inconvenience we may have caused and recognize how difficult the circumstances are when a child dies. We will work with Ben’s family to address any concerns.β
A hospital source said there is no evidence of any research or testing on cells after 1990.