How we told our story

It's an alarming experience to suddenly have the world's media on your doorstep privacy, once lost, is hard to regain, writes Zahra Borno.

Banbury couple Barbie and Paul Clynes found themselves beseiged by TV crews and reporters from local and national newspapers after they decided to tell the world their story last month.

Just six weeks ago the couple found out that their three-week-old son Marc, a cot death victim, was buried without his brain after pathologists at the John Radcliffe Hospital, Oxford, removed it and threw it away as 'medical waste'. Marc died 15 years ago on Barbie's 18th birthday. The couple, who now have five other children, were left heartbroken at his death and still visit his grave at least three times a week.

Until late last year the couple had no reason to suspect that their son had been buried without his brain or other vital organs.

It was only when news about organ retention at Alder Hey Children's Hospital, in Liverpool, and at the Bristol Royal Infirmary, came to light that doubts began to creep in.

Barbie, 33, says: "We sat watching the news when they started talking about Alder Hey and we thought it soundexd awful what had gone on there. "Then it came on Panorama and I watched it because I was interested. After that programme, we kept asking ourselves whether a similar thing might have happened at the John Radcliffe Hospital to Marc.

"I didn't think it would be possible - the JR is such a big, respected hospital but it kept going round and round in our minds. It was one of those awful things that wouldn't go away so we thought we would confront the doctors and ask them.

"At the time we just thought they would set our minds at rest and say that we had nothing to worry about little did we know."

Speaking to them at their semi-detached home in Woodfield, it is clear their sense of loss is as strong today as ever before. Paul's gaze is constantly drawn to the pictures of baby Marc hanging on the wall. From time to time Barbie stares into the distance as she remembers her son. The couple say they knew that Marc's brain had been removed during a post-mortem examination held at the JR but as far as they knew it had been replaced once the investigation was complete.

Paul, 37, says it didn't cross his mind for a moment that it might have been retained and that Marc had been buried without it.

"Of course we were both really shaken at the time of Marc's death but you don't think that anything like that could happen.

"With the benefit of hindsight I wonder whether we should have been suspicious. I was told I couldn't carry his coffin at the funeral. Could it have been because I might have noticed a difference in weight? After all the brain is one of the heaviest organs." In March, Paul went along to the Horton General Hospital, in Banbury, to get some answers. He was hoping his fears would be allayed but it was then that he was informed that Marc could have been buried without his brain.

He says: "I just went cold when the doctor said there was a strong possibility that the brain had been retained.

"I asked him how we could find out for sure and he said he'd write to the JR to get some answers. A short time after a letter arrived from the JR saying that Marc's brain and samples from several other organs had been retained.

"You can imagine my shock. I was eating my breakfast and at first I felt physically sick. Then the anger took over."

Paul's blue eyes flash with passion as the anger wells up inside him again. "It was then that I decided to go to the press. I am usually a very private person and we keep ourselves to ourselves but I wanted to shout this from the rooftops.

" I wanted everyone to know what they had done to our son," he says.

The couple said they wanted their story to go to a bigger audience as possible.

They claim they did not decide to go public in the hope of making any money out of the story but simply wanted to get maximum publicity.

The couple thought long and hard about the best way of doing it and then Paul had the idea of contacting the renowned publicist Max Clifford.

He has arranged publicity for a string of celebrities and people with a story to tell such as Mandy Allwood, the woman who became pregnant with octuplets and Antonia de Sanchez, the former lover of then Cabinet Minister David Mellor. Paul explains what happened.

He phoned Directory Inquiries to get Mr Clifford's number and left a message on his answerphone briefly outlining his story without giving away too many details.

He hadn't heard anything within an hour and so called back and got through to one of his assistants.

Paul was told that Max would be able to help and an interview was arranged with The Express newspaper.

Paul says: "The reporter came with a photographer and we did the interview. We didn't realise it was going to go on the front page that was a complete shock.

"The day it came out we were in a bit of haze. We suddenly had TV camera crews and reporters from loads of different newspapers knocking on the door.

"We spoke to Max Clifford's firm again and they said we could give interviews to whoever we wanted.

"It was a mad day and we were completely shell-shocked but we went through it all because we wanted as many people as possible to hear our story." The couple are aware that some people think they have made a lot of money out of going public but they say they have not received a penny from any media organisation.

"We have not sold the story or signed any contracts. We did not come forward for money and want people to know that.

"You'd probably make a lot of money if you had pictures of a celebrity naked but people like us are not going to make big money. All we wanted to do was to raise awareness."

Now that all the media hype has died down the couple say they are left with a feeling of emptiness.

Paul says: "I think we feel that way because we had so much media attention and then suddenly it just stopped. It brought up so many emotions and upset us, but if I was asked if I'd do it again then I wouldn't hesitate - I will talk about this to anyone who will listen." Family's pain after the loss of their son The Clynes say it would help them come to terms with everything that has happened if they were able to talk to people who have been through a similar experience as them.

Earlier this month the Oxford Mail revealed that hundreds of children's brains were kept by doctors at the JR without parents giving their consent.

The shocking admission was made by Dr Steven Gould, JR consultant paediatric pathologist who led the internal inquiry at Alder Hey. He said until recently pathologists did not tell relatives if they removed organs because it was thought it would only add to their grief.

When Paul and Barbie first found out that their son's brain had been disposed of as 'medical waste' they considered getting in touch with the support group for families involved in the Alder Hey Children's Hospital scandal.

"If there are parents out there who have found out that this has happened to their children and want to talk about it then I would urge them to contact us through the Oxford Mail," says Paul.

"We want to form our own local group so people have somewhere to turn to. It's not that I'm against organs being used for medical research but we should have been given the option to refuse permission for Marc's brain to be retained."

Do you have a story to tell about organ retention at the John Radcliffe Hospital. If so e'mail Zahra Borno at zborno@nqo.com