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Hospital stole my baby's brain

May 26 2002
 

 

By The Sunday Sun

 

A distraught mum has told how a North hospital removed her dead baby's brain without permission . . . then sliced it up like meat.

The discovery was made by Kim Stephenson while she was still coming to terms with the death of her two-year-old daughter Chelsea Watson.

Kim, 36, and partner Paul Watson, 44, then faced further heartache when they had to exhume their child's body and re-bury it with the missing organ . . . which had been sliced into pieces for experiments.

The couple's nightmare began when Chelsea died from Sudden Death in Epilepsy, or Sudep.

After being ill all weekend, Chelsea was found unconscious in bed after suffering a massive fit in November, 1999.

Staff at Newcastle's Royal Victoria Infirmary battled in vain to save her, but sadly she died.

After the post-mortem examination, Kim and Paul said they sought assurances from both the RVI and coroner's court that none of their daughter's organs had been kept.

They claim that they were told only a blood sample had been retained.

Two years later the Alder Hey scandal broke when it was revealed that thousands of body parts from children had been taken by the Liverpool hospital without parental consent.

It then emerged that a similar practice - though on a smaller scale - had been discovered at hospitals run by the Newcastle NHS Hospitals Trust . . . including the RVI.

Kim said: "I felt I had failed her by letting her sleep and not bringing her downstairs so I could keep an eye on her. So when we found out the hospital had kept her brain I felt I had failed and betrayed her again . . . because she wasn't buried whole."

The couple, of Longbenton, North Tyneside, contacted health bosses again and received the news they dreaded . . . senior hospital staff admitted that Chelsea's brain had indeed been removed.

"The day Chelsea died was the worst day of my life," said Kim, who also has two sons, Aaran, 18 months, and Anthony, 14.

She said: "I feel that the whole medical profession are arrogant.

"They always think they know best and that's not always the case. When I went to see her brain at the hospital I was horrified to find it was all sliced up - like a piece of meat on sale - and it was in a plastic bag.

"I asked if they had found anything from their research and was told they had not, so it was all for nothing.

"At no time did anyone from the coroner's office or hospital tell us Chelsea's brain had been kept."

Kim also said that even the post-mortem report did not indicate that any of Chelsea's organs had been retained.

She said: "All we got in the way of apology from the RVI was in a letter confirming they had her brain.

"We had to dig up Chelsea's grave and put her brain back with the rest of her remains. This was horrendous and I can't forgive them for what they did.

"I am speaking out now to make sure it never happens again."

An RVI spokeswoman said: "We cannot discuss an individual patient's medical history.

"If Miss Stephenson is unhappy she should discuss her concerns with us."

Newcastle coroner David Mitford said it was standard practice for the brain to be removed for examination when epilepsy was suspected as the cause of death.

However, before the Alder Hey scandal, parents were not always told. Now, they are not only told, but also receive a post-mortem report detailing what has been carried out.

Mr Mitford said: "Before Alder Hey there was less awareness about the ways things should be done.

"We would inform the relatives of the cause of death and whether they wanted to know if any tissue or organs were retained."

Medic could stop these deaths, say experts

The deaths of six out of 10 child epilepsy sufferers could be avoided, a report claims.

Failures by the medical profession in the treatment of the condition have been blamed.

Many of the victims of Sudden Death in Epilepsy, or Sudep, are children who go to sleep at night and never wake up.

Yet a report by Epilepsy Bereaved says there are treatments available to health bosses which would stop at least 60 per cent of these deaths happening.

About 23,000 people in the North have the condition and it is estimated that 50 people die from epilepsy each year . . . half of those from Sudep.

Expert professor David Fish said: "The report found failures in the provision of care throughout the system.

"It concluded that poor epilepsy management had resulted in a substantial number of potentially avoidable deaths."

The study was funded by the National Institute for Clinical Excellence, or NICE.

It looked at 595 deaths nationally and found inadequate levels of care in 77pc of child deaths and 54pc of adult deaths.

The report said 59pc of child deaths and 39pc of adult deaths could be avoided.

It also claimed that poor access to specialists, a lack of appropriate investigations into the condition and inadequate drug management were to blame.

The study criticised the lack of communication with families, even though they might have older children who also had epilepsy and could also be at risk from Sudep.

It was one such breakdown in communication which contributed to baby Chelsea's death.

"Chelsea developed epilepsy after she had a whooping cough vaccine at the age of four months," said mother Kim Stephenson of Longbenton, North Tyneside.

"She had the jab in the morning and in the afternoon she had her first fit.

"Her dad Paul had epilepsy when he was young and we believe we should have been informed that whooping cough can cause the condition. We later learned that in the past, if there was a family connection to epilepsy, doctors would advise parents not to go ahead with the vaccination.

"If we had been told this then we could have made a personal choice whether to let Chelsea have the vaccination or not.

"As it was, they denied us this choice by not informing us of the facts.

"The National Health Service also let us down by not telling us when she was diagnosed that Chelsea could die from epilepsy.

"I only found out because I saw it on a television programme.

"When I asked hospital staff about Sudep, they told me that Chelsea had a greater chance of being run over by a car than dying from Sudep.

"Every parent who has a child with epilepsy should be told all of the risks . . . including those from Sudep.

"It is an illness that no one chooses to have, but sufferers should have the right to be able to go to sleep and wake up the next day.

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