‘My baby died at six-weeks-old – doctors took his brain and never told me’

‘Why could I not see my baby’s body before his funeral?’

For decades, that question haunted Jane Andrews after her six-week-old son’s death in January 1980.

When she laid him to rest days later, she didn’t know that his brain was missing.

It was another 20 years later that she found out that doctors at Southampton General Hospital had taken and disposed of it without telling her.

Now 81, Jane is telling her story for the first time and told Metro she is still seeking answers about what happened to her son’s body after he died.

She said: ‘I thought John was all complete. But now I know I never buried him completely.

‘I was deprived of my final goodbyes. That is hard to live with. I think it is disgusting and terrible.’

Jane was 35 and working as a shop assistant in Salisbury when she was pregnant with John.

His birth would have been a bittersweet moment for her, having lost her first son Michael, in 1967 shortly after he was born.

She suffered years of reproductive issues and miscarriages and then John arrived, seven months into the pregnancy.

Jane’s pregnancy was already high-risk. She had been prescribed the controversial drug DES, which she believes caused a life-threatening tumour.

When her waters broke early, she was rushed to Southampton General for an emergency caesarean to save John.

When she came round, her newborn son was in the hospital’s special care baby unit.

‘I got him christened as soon as I could because it wasn’t clear if he was going to make it,’ she said.

‘Each day I was allowed to go down and look at him in an incubator and I was allowed to just hold his hand.’

Just when Jane was making preparations to take him home, John died from pneumonia, prematurity birth asphyxia and respiratory distress syndrome.

Jane said: ‘They let me nurse him in a special baby unit for a few minutes, and they took him away.’

That was the last time she ever saw John’s body.

She said: ‘I wanted to see him before the burial, but it was either I wasn’t allowed to or it was advisable not to. I always wondered why.’

An undertaker told her it was because she would not want to see his body after a post-mortem.

At first she accepted this explanation and even went on to take a career in nursing as a way of giving back to the NHS.

But as time moved on, the nagging questions at the back of Jane’s mind grew louder.

She said: ‘I blamed myself all the time for John’s death. That is hard to live with when you have that 24/7 over your head.

‘But the more I thought about it, when you lose somebody you are allowed to see them before they are buried and spend time with them.’

When she wrote to the hospital in 2001, nothing could prepare her for the reply she received from the then Chief Executive of University Hospitals Southampton NHS Trust, David Moss.

He told her: ‘You are probably aware that after John’s death in 1980, a post mortem examination was carried out at the request of the doctor to try and establish why he died.

‘I can now confirm that John’s brain was removed as part of this examination.

‘I can also confirm that after the post mortem investigations were completed, the hospital arranged for his brain to be respectfully disposed of by cremation.’

He added that as part of the post mortem examination, John’s body needed to be kept in a special preserving fluid for up to eight weeks.

He apologised unreservedly and told Jane she was not informed because they did not want to cause her more distress.

She said: ‘When I read the letter it made me feel worse.

‘All the time I had been blaming myself. I feel that I was cheated from having him buried respectfully.

‘I do not know what happened to his brain. If it was “disposed of properly” why was it not put in an urn?’

The letter from University Hospital Trust also said that ‘very small samples of tissue’ were taken from other parts of his body.

The letter went on: ‘I am sorry that you were not told about this at the time of your baby’s death.

‘This was not because anyone was deliberately trying to withhold information.’

Her granddaughter Emma, 30, is just as devastated about what happened to the great uncle she never got to meet.

‘She had a newborn baby whose organ was ripped apart, and his mother had no chance of saying goodbye.

‘It makes you wonder. Was this just her? Was this other people? Why did my nan have to live through this?

‘If there’s one thing that I can go out and do for her now, it is reclaim some justice for her. She’s alive, and it’s her time to tell her tale.’

Emma has faced reproductive issues her whole life and considers herself a ‘DES granddaughter’ because of the dangerous drug her gran was given.

She is part of a campaign to get justice for those given the drug and says questions are still unanswered about what role it played in John’s death.

Campaigners have rallied around Jane and Emma’s demands for answers.

Paul Whiteing, CEO of Action Against Medical Accidents, told Metro: ‘At AvMA we sadly see too many cases where families encounter a tragedy at birth and the hospital holds back key information and facts about what happened to their child.

‘The trauma that this causes to the family is profound and can last a lifetime.  

‘Families deserve dignity, respect, honesty and clear information. Anything less is morally wrong and causes unnecessary trauma to families already grieving from their loss.’

University Hospital Southampton NHS Trust said they would not comment further beyond the letter they sent to Jane in March 2001.

The Department for Health and Social Care said it was also sorry about what happened to Jane.

A Department of Health and Social Care spokesperson said: ‘We are deeply sorry to hear about Jane’s experience and our thoughts are with her and her family.

‘Families should always be treated with dignity, respect and compassion. Clear consent and communication must underpin decisions about post-mortem examinations and the handling of organs and tissue.

‘While practices and standards have changed significantly since 1980, we expect the highest standards of care, transparency and accountability across the NHS.’

The government also thanked DES campaigners for ‘shedding light on the lasting harms’ caused by the drug.

It added it is working with cancer alliances to ensure clinicians were are aware of the impacts of DES and NHS screening guidance.

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