Julie Middleton, 40, lost her baby son Regan to cot death when he was just six weeks old. She had no idea that doctors at Southampton Hospital removed his brain when his body underwent a post mortem, and thought she had buried her child 'complete'.
Regan's brain was discovered during a nationwide audit being carried out into human tissue samples kept by police. The family have been told they can have the organ buried in Regan's grave.
Speaking to The Sun, Julie, of Poole, Dorset, said: "It feels like they stole a piece of my baby."
She says she and her ex-husband, Michael Wilson, will bury their son's brain but said it will be too painful to go through another funeral:
"We won't be able to attend - it will be too painful for both of us. I thought I'd said goodbye to Regan all those years ago. I can't face going through it again.
"They offered me a free funeral and I thought, 'What are they going to do? Have the brain in a jar on the pulpit?'"
The family knew tissue had been taking from Regan during the post mortem, but had no idea a complete organ was harvested.
Julie said her world was 'turned upside down' by the arrival of the police officers at her door on Wednesday:
"I thought it was my M&S delivery but it turned out to be a visit that has turned my world upside down. I could tell from their faces they had something horrible to tell me. They said, 'Regan's brain has been found in Southampton Hospital in a jar.'
I didn't take anything else in after that. I couldn't believe my ears and just went numb.
"All these years I'd been thinking he was complete when I buried him. How on earth could something like that happen? I'm devastated."
Julie said Regan's death had always been 'bubbling away in the background' and now all the pain of losing him has come back. She added that she felt 'lied to and duped and let down.'
A Southampton Hospital spokesperson told The Sun they had been ordered to retain Regan's brain at the 'request of the Home Office/Dorset Police as part of a forensic case for the coroner'.
What an awful thing for the family to go through so long after their baby's death.