A mum whose son’s brain was removed without her knowledge after he died has voiced her horror after learning that parts of other organs were also taken.
June Bayley, 61, buried tragic 12-year-old Ben Mallia in 1997, unaware that his brain had been taken out during an autopsy at Addenbrooke’s Hospital in Cambridge.
This month she learned that parts of his lungs, pancreas and liver were also removed.
She now plans to exhume a box buried alongside him to find out if they were returned, as hospital chiefs claim.
June, who has been diagnosed with Post Traumatic Stress Disorder (PTSD), said after the latest devastating revelation: “I was absolutely gobsmacked, I broke down in the car.
“I couldn’t believe what I was reading. It’s absolutely disgusting, people need to know.”
Ben, who was terminally ill with a rare brain condition called DRPLA, died at home after contracting bilateral bronchopneumonia in August 1997.
June believes there was no reason for an autopsy to be carried out, and had no idea his brain was removed.
“I’m Roman Catholic, when Ben passed away I had him come home for a couple of days,” she recalled.
“I was told whatever you do, don’t touch his head. I thought his eyes looked strange, but I didn’t know his brain had been removed.”
In the months following his death, June suffered distressing nightmares, which eventually prompted her to seek out his autopsy report.
She said: “I kept having really bad nightmares about my son, I went to my doctor and said ‘I’ve just got a feeling they did something to Ben.'”
June said her doctor obtained the report in 1999, and it was from this that she learned Ben’s brain had been in a lab for 18 months without her knowledge.
During her son’s lifetime, she had told medics that she did not consent to his organs being removed – which she says would have been in his medical records.
At the time the law said organs could only be taken out if there was “no reason to believe” relatives would object.
“You can’t desecrate a body like this, there’s proper protocols,” she said.
“He was suffering so much alive, I told Ben’s doctors that no one is touching him when he died.”
His brain was finally returned in 2001 in a box which was buried alongside Ben in Bury St Edmonds.
“A priest blessed the box and I thought that’s the end of it,” June said.
But she was troubled by a reference in the autopsy report saying that Ben’s spinal cord had been removed.
The hospital later said this was a “typographical error”, and June decided not to pursue it until she was diagnosed with PTSD earlier this year.
“In order to go forward you have to go back,” she said. “So I decided I had to find out what had really happened.”
She contacted Cambridge University Hospital Trust, and discovered a lab report written following Ben’s death had survived – which she demanded to see.
What she learned was worse than she expected, as it contained references to the other organs.
The trust said a number of slides containing traces from Ben’s lungs, liver and pancreas were returned along with his brain.
June said she now wants to verify this is the case, as she did not look inside the box.
“They hadn’t told me about them, I just knew his brain was in there,” she said.
“I will have it exhumed. I need to know the truth. If they returned the slides, the glass will still be in the box and I will know for sure.”
To this day she has no idea what happened to Ben’s brain in the four years after he died.
“I’m a realist, I know there’s a lot of money to be made in research,” she said.
She does not accept the hospital’s assertion that Ben’s spinal cord was not removed, and says she will take them to court if needs be.
“I want them to tell me what happened under oath,” June said.
The trust’s medical director, Dr Ashley Shaw, said: “We have had two meetings during the last two months with Ms Bayley, and were able to talk through the same information that had been provided by the Trust in 2001, at the time of the National Organ Retention Enquiry.
“As previously stated, the only organ retained after her son’s post mortem here, was the brain.
“This was returned to Ms Bayley in 2001 via funeral directors, together with all the paperwork relating to this case, and a number of slides containing tiny pieces of tissue from the lung, liver and pancreas used for microscopic examination at the time of the post mortem.
“For the avoidance of any doubt, nothing else was removed or retained and nothing has changed since our correspondence with her lawyers in 2001.
“Ms Bayley has our continued sympathies for her devastating loss.”