PARENTS who discovered their dead babies' organs were removed without consent have taken their cases to the High Court in a bid to get justice.

Salisbury couple Mr and Mrs Smith (who do not want to be identified) were finally told their son Andrew had been buried without his brain, eyes, central nervous system and spine 37 years after he died of a brain tumour in 1965.

Their heartbreaking discovery came in the wake of the Alder Hey organ retention scandal, when the NHS admitted a nine-week-old baby's tissue had been kept without their permission by the John Radcliffe Hospital in Oxford.

"After what happened at Alder Hey, all the hospitals set up helplines and we called to find out what happened to our son," said Mr Smith. "We had to satisfy our minds."

After months of correspondence, the couple finally learned the devastating truth.

"Imagine what it was like getting that news in a letter," said Mr Smith. "That letter destroyed us. Our child, who we presumed had been buried all those years ago, had been violated."

As it became known just how many families had been affected by unauthorised organ retention, Mr Smith became involved with the support group Legacy.

After three years of preparation, many members began actions in the High Court in London on Monday, seeking compensation for their grief and suffering.

"This has destroyed lives," said Mr Smith. "We want the hospitals to recognise what they did to us - it wasn't just Alder Hey.

"We are still going through it. They simply didn't ask us, they just took the organs - as if we hadn't suffered enough."

Marion Joyner, of Wilton, experienced similar heartbreak following the death of her daughter, Alice, in 1995.

During the post mortem examination, doctors removed some of her organs, and these were incinerated at Southampton Hospital before Mrs Joyner eventually discovered what had happened to her tiny daughter, three-and-a-half years after she died.

Although she has not taken her case to the High Court, Mrs Joyner hopes all the hospitals that retained organs without permission will accept liability.

She said: "It's not about the money - although it would be useful, after all the heartbreak we have gone through.

"It's an apology that really matters. You want someone to accept what they have done to you.

"My daughter was buried without her brain and we could never get it back - it is a living nightmare."

Sharon Murrant, of Legacy, said the litigation would help some parents but long-term measures must be introduced to stop unauthorised organ retention from happening again.

"Some will get closure from it," she said. "They want recognition that people all over the country have been affected.

"We cannot actively endorse legal action but we support those who want to pursue that avenue."

The group also has a support network and a 'buddying' scheme through which parents help each other, and is working to increase public awareness of the issues surrounding organ retention.

"It needs to be out in the open," said Mrs Murrant. "A lot of trust in the NHS has been destroyed."

A spokesman for the Department of Health said: "The government takes the issue of organ retention very seriously.

"Following the Alder Hey case, a census was carried out across the NHS to find out how widespread the problem of organ retention was.

"The report was published by the chief medical officer in January 2001, and that practice has now been stamped out.

"The Human Tissue Bill, which is currently going through parliament, implements changes following the Bristol, Alder Hey and Isaacs inquiries and will mean that legislation is in place to ensure that no part of a patient can be retained without consent.

"We are aware of this case, which the NHS Litigation Authority is handling, but are unable to comment any further at this time."

If you would like to get in touch with Legacy, contact Sharon Murrant on 01993 706001.