A DISTRAUGHT Suffolk family who claim an East Anglian hospital removed the brain of their 14-month-old daughter without their consent are to launch a High Court battle against the NHS.

A DISTRAUGHT Suffolk family who claim an East Anglian hospital removed the brain of their 14-month-old daughter without their consent are to launch a High Court battle against the NHS.

Andrew and Kim Wallace allege Addenbrooke's Hospital removed the brain of Kayleigh after she lost her fight against meningitis five years ago.

They say the Cambridge hospital admitted what it had done one year later, and said it had also taken slides of more than 30 of Kayleigh's organs without their permission.

Now they are joining the families of about 2,000 dead children whose body parts were removed without proper consent to launch a legal bid for more compensation from the NHS.

They will claim next Monday that health chiefs offered them just £1,000

compensation compared with the £5,000 compensation offered in the Alder Hey case.

Mr Wallace, from Elmswell, near Bury St Edmunds, said yesterday: "The whole situation has been unimaginably distressing – I wouldn't have wished it on anyone and it has got worse day by day.

"We didn't even know Kayleigh was laying in her coffin with her brain taken out. Her auburn hair was always swept forward – but when we saw her in the coffin, it had been swept back to cover the scar.

"When we found out, we had to have a second funeral just for the body parts."

Kayleigh was just 14 months old when she was rushed to West Suffolk Hospital in Bury St Edmunds with what turned out to be meningococcal septicaemia. She was transferred to Addenbrooke's where she was christened just hours before losing her fight for life.

Mr Wallace said: "The hospital said at the time they had to carry out a coroner's post mortem as Kayleigh had been in Addenbrooke's under 24 hours. But the coroners then said they were quite happy, given the severity of how Kayleigh died, and that they didn't need one.

"We told them we didn't want a finger laid on Kayleigh, but Addenbrooke's decided to carry out a post mortem without our consent – and we didn't even find out until about a year later."

A spokeswoman for Addenbrooke's admitted mistakes had been made in the past, saying: "We realise this is a very difficult time for the families involved, who have already suffered distress, and we are sorry that unacceptable practices from the past are continuing to cause anxiety for them.

"At the time this issue first came to light, Addenbrooke's had already changed its process for the retention of organs and tissue following post-mortem examinations.

"We understand that it is crucial to seek informed consent from the families involved, and have continued to fully review our procedures and have rewritten all information that involves giving consent for post-mortems.

"Our current procedures follow all published guidelines, and are fully compliant with Department of Health recommendations."

The parents of 2,000 dead children from across the country have opted for legal action to demand the same £5,000 compensation given to Merseyside families in the wake of the Alder Hey scandal 18 months ago.

They are set to launch a multi-million pound legal action next week over the removal of body parts without consent by NHS trusts around England.

But they stressed the point of the legal action was not about the money, which could never make up for the trauma suffered by relatives.

Mr Wallace said his wife became concerned after the controversy hit the headlines and wrote to the hospital asking if any parts had been removed from the couple's daughter. They said they were horrified to discover that the hospital had retained her brain and had taken slides of 34 organs.

Mr Wallace said the tragic events had an extremely detrimental effect on the family, adding: "The money they have offered us has been absolutely horrendous and nothing compared to what they have put us through.

"Since Kayleigh's death, we have got ourselves into financial difficulties and we have had to re-mortgage the house. Either the court case is going to cost the NHS a fortune or we might have to declare ourselves bankrupt."

As well as an impending court case, Mr and Mrs Wallace also have two young children to look after, Kyle , three, and three-month-old Ashley.

A Human Tissue Bill currently going through Parliament aims to prevent future organ scandals by making consent the cornerstone of legislation.

A Department of Health spokesman said: "We fully understand the trauma and difficulties that can arise in such circumstances that is why we are taking positive action to change the law to ensure that this can no longer happen.

"The Human Tissue Bill, currently before Parliament, will introduce penalties for organ retention without consent in the future.

"Although the Government is not a party to these actions - which are being taken against NHS Trusts and not against ministers - we have urged both sides to reach a reasonable and amicable settlement.

"An original offer was made that was not acceptable to the families. This is now going to be decided objectively through the court process and we cannot comment further."

The case goes before the High Court on Monday and is listed to last for four weeks.