by Thelma Etim BBC News Online, Southampton

The John Radcliffe Hospital, where Andrew Smith died

Mervyn Smith, 64, and his wife Christine were devastated when they lost their nine-week-old first child Andrew in 1965 after he was diagnosed with a brain tumour.

But their grief turned to anger years later, when they discovered the Oxford Radcliffe Hospital in Oxford had retained his organs without their permission.

The couple claim hospital representatives "casually" offered them their dead son's tissues - which were contained in a casket - without warning during a meeting at Salisbury Hospital in Wiltshire.

'Sickened and stunned'

Mr Smith, a former porter at Christchurch College, said: "We were horrified. Halfway through the meeting we were informed they had actually brought Andrew's tissues with them.

"You cannot imagine it. We were told we could either take them then and there or they would take them back to the John Radcliffe.

"We came out of that meeting sickened and stunned."

Our child, who we presumed had been buried whole all those years ago, had been violated Parent Mervyn Smith

After Andrew died at the then Radcliffe Infirmary, the couple later moved from Oxford to Salisbury.

They were unaware Andrew's organs had been removed before they buried him until after the organ-stripping scandal at Alder Hey Hospital on Merseyside came to light in the 1990s.

It was only when it was revealed the Oxford hospital was also involved in keeping organs that they decided to seek reassurance that his were not among them.

Grim discovery

Mr Smith said: " I thought: 'Oh my God! Andrew died there, I wonder if they did that to him?' We had to satisfy our minds."

After calling the John Radcliffe's helpline in October 2001 and months of correspondence with the hospital, the couple finally received a letter at the beginning of 2002 confirming their greatest fear.

Andrew's brain, eyes, central nervous system, spine and part of his skull had been removed.

Tissues samples had also been taken from the baby's heart, lungs and testes.

'Enormous stress'

Research will be regulated under the new Human Tissue Bill

Mr Smith added: "That letter absolutely destroyed us.

"Our child, who we presumed had been buried whole all those years ago, had been violated.

"I have had four heart attacks and a double bypass. My wife developed diabetes due to the shock of all this.

"The stress has been enormous."

The couple claim they were told it was "common practice" to retain organs during their meeting at Salisbury Hospital, where the task force manager for John Radcliffe's retained organ's office offered them Andrew's tissues.

A clinical psychologist at Salisbury Hospital, who also attended the meeting, came to their aid and offered to store their son's tissues until they were prepared to collect them.

The Smiths never discovered why Andrew's organs were kept.

At one stage, they were also told they may have been destroyed.

Court battle

They are among a number of families taking the NHS to the High Court over the issue of organ retention, but say their battle is not for the compensation.

The new Human Tissue Bill proposes a regulating authority to make sure that consent is obtained before organs and tissues are kept by hospitals.

Taking tissue without consent would become an offence.

A spokesperson for the Oxford Radcliffe Hospitals NHS Trust said the Trust could not comment on "aspects of individual cases because of respect for patient confidentiality".

"Our lives have never been the same since and will never be the same again," added Mr Smith.