More than 100 bereaved North-East families who discovered body parts were taken from their children by the NHS without consent are lock in a battle for compensation. But not all the parents want the money.

Hayley Gyllenspetz speaks to one family who have overcome their initial horror and are now happy their son's organs could help others.

JAMES Robert Whitfield was just five months old when he died in April 1995, a victim of Sudden Infant Death syndrome. Because of the nature of his death, on top of their overwhelming grief his devastated parents, Simon and Kathleen, had to go through the trauma of police interviews and a post-mortem examination at Darlington Memorial Hospital.

Then, after living through one nightmare, they had to face another following the Alder Hey organ retention scandal in 1999. It was discovered that thousands of organs had been retained by hospitals without permission, and the Government ordered NHS Trusts around the country to tell families what had happened to their children.

The Whitfields thought their son had been laid to rest. They were wrong.

"When it all came out in the newspapers we were totally shocked," says Kathleen. "It sent shudders down our spines. At the time of the post-mortem, we never thought twice about any of his skin tissue or organs being removed from him. We had to know for sure if any of James's organs had been removed from his little body."

Like many other parents, Kathleen and Simon rang the hospital to see if there was any record of what had happened to their baby after the post-mortem.

They had to give James's details and were then told to wait for a letter confirming whether or not his organs had been removed, without their consent, for medical research.

Kathleen says: "Each morning we waited for the postman and when the letter eventually arrived postmarked South Durham Health Care, it felt like a nightmare that we wished we'd never started."

Simon read the letter, which told them that during the post-mortem some tissue from James's organs had been removed. The couple were given a phone number to contact the hospital to arrange to collect the slides containing their child's samples and to receive counselling.

On hearing the devastating news, many families decided to pursue the hospital for compensation, angry that their children's bodies had been defiled without their consent. Samples were returned to emotional parents who carried out new funeral services so they could finally lay their children to rest. Simon and Kathleen made a different decision.

Kathleen says: "I contacted the hospital and told them they had our permission to use James's samples if they could be of any help in finding a cause for Sudden Infant Death syndrome. To us, it was a worthwhile cause, helping to find a cure so that other parents do not have to suffer the way we have since the day he died."

Despite their selfless act, the couple were angry with health officials who had made a decision to use their son's body without asking them.

Kathleen says: "The NHS was wrong to take advantage of all of us bereaved parents. They should have explained what they were going to do and how they were trying to help other people so they didn't suffer the same loss.

"But we decided not to sue. The NHS needs money for equipment to help save lives. If I were to ever to come into a lot of money, I wouldn't hesitate in giving some to NHS research. Without them, there would be no cures. Abroad, people have to pay privately for medical care. Do we want that to happen here?"

Both Simon and Kathleen are organ donors and they believe the only difference between their pledge to help others when they die and what happened to James was the lack of consent.

Kathleen says: "The heartache of losing James will never go and no price could ever be put on his life. I often think of all the skin grazes and knocks he would have suffered if he'd been here today and the tears he would have shed.

"None were shed the day they took his tissue samples, he was in no pain - only we suffered. I am not condemning parents who are looking for compensation but I feel no amount of money could ever ease my loss."

Simon and Kathleen now have two children Katie, six and Simon, four, and James is still a large part of their lives.

Kathleen says: "We talk about James. He is part of the family and although we can't bring him back, we will never forget him. Maybe his death will now help someone else."