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Answers start after years of hitting official wall of silence; Twenty eight babies died and 15 were left brain-damaged during the controversial ventilator trials at North Staffordshire Hospital. Jonathan Walker and John Revill report.

Debbie Henshall and her husband Carl lost one baby daughter when North Staffordshire Hospital was testing its experimental ventilators - and another suffered brain damage.

Mrs Henshall, aged 35, of Clayton, Newcastle-under-Lyme, went on to found the CNEP family action group after encountering what she describes as a wall of silence when she tried to find out about her babies' treatment.

The group was set up to discover the truth about the hospital's use of Continuous Negative Extrathoracic Pressure ventilators, which used decompression chambers to reduce air pressure around a baby's lungs and allow the child to breathe unaided.

Her daughter Stacey, born at 28 weeks, died in 1992 after her husband signed consent forms allowing her to receive CNEP treatment.

He claims he was told the CNEP ventilators were the best and most up-to-date in the country - and doctors never mentioned they were experimental.

Last night he said a midwife, whom he later discovered to be a trainee, told him they offered a 'kinder, gentler treatment' compared to traditional ventilators, which generally involved putting an air tube down the baby's throat. He said: 'She told me a horror story about the conventional treatment.

'Stacey died on Valentine's Day and the cause of death was recorded as extreme immaturity and renal failure. But that's ridiculous because she was never treated for renal failure.'

The following year the couple's second child Sofie, born at 32 weeks, suffered brain damage after being placed in the experimental ventilator.

Mrs Henshall was extremely ill after a Caesarean section, and was on morphine. She insists she was incapable of giving her consent and Mr Henshall was not in the hospital.

She says the family never gave consent. 'I did not sign anything. I have been shown a form that bears my signature but I know I never gave consent.

'It shows the baby's name but, in fact, we had not decided on the name until the day after this form was supposedly signed.'

Mr Henshall said: 'It seems to us there are two possibilities. Either it is a fake or my wife was somehow tricked into signing it at a later date.

'The baby eventually came home after seven weeks but the first sign that something was wrong was that she couldn't feed normally.

'I had to learn how to feed her through a small tube that would pass from my mouth to hers. She was also a very nervous baby who would startle easily.

'Throughout her first few months of life I asked and asked and asked what was wrong with her but it was not until she was two years old that she was diagnosed as having cerebral palsy. We have no doubt that it use of the new ventilator that caused that.'

Mr Henshall said the report released yesterday vindicated the family's campaign to discover the truth behind the experiments.

He said: 'There is a lot in it that acknowledges our concerns. It says we are not just two troublesome people - that there is a problem here, and let's put it right. There are still many questions to be answered but it is a start.'

Mrs Henshall added: 'This report is just the beginning of addressing our concerns about the way these babies were treated.'
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Publication:The Birmingham Post (England)
Date:May 9, 2000
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