‘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?’

That question haunted Jane Andrews for decades after her son John died at just six-weeks-old in January 1980.

When the devastated mum, now 81, laid him to rest days later, little did she know he was missing one of his most vital organs.

More than 20 years later she found out the truth. Doctors at Southampton General Hospital had taken John’s brain and disposed of it without telling her.

Now Jane is sharing her story for the first time and is still seeking answers about what happened to her son’s body after he died.

The grandmother told Metro: ‘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 a 35-year-old shop assistant from Salisbury when her waters broke just seven months into her pregnancy with John.

Her first son, Michael, was just a newborn when he died in 1967 and she had suffered years of reproductive issues and miscarriages.

Jane says she was repeatedly given the scandal-hit drug Diethylstilbestrol (DES), which is now linked with severe, long-term health issues for those who were exposed from the 1940s to 1980s.

The mum, who had a son called Simon in 1972 and is still alive, believes DES caused her to develop a huge tumor in her reproductive system which meant her waters broke early.

She was immediately transferred from Salisbury District Hospital to the advanced Southampton General Hospital, where she had an emergency cesarean.

When she came round, John 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 in the special care unit, with the death certificate listing pneumonia, prematurity birth asphyxia and respiratory distress syndrome as the causes.

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.

The now retiree, who was then discharged from hospital, claims she was all but stopped her from seeing her son when she requested a final viewing.

‘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’, she said.

‘When I queried it with the undertaker, he said it was because John had a post-mortem and it’s not very nice after a post-mortem.’

Jane accepted this and was so thankful for the NHS support that she went on to start a career in nursing as a way to give back to the health service.

But as the years went by nagging questions about John’s burial only grew louder.

Jane 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.

‘The more I thought about it, I wasn’t allowed to do that.’

So, in 2001, she wrote to the hospitals about her suspicisions.

Weeks later she received a bombshell reply from the then Chief Executive of University Hospitals Southampton NHS Trust, which runs Southampton General Hospital.

The Chief Executive, D.J. Moss, 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.

He continued: ‘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.’

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.’

The note explained that John’s brain could not have been present at his body at the time of his funeral because it had to be placed in special preserving fluid for six to eight weeks before examination.

The chief executive – who apologized unreservedly – said the hospital never told Jane because they did not want to cause her more distress after losing a child.

‘We realise now that however well meaning this was, it was misguided,’ he said.

‘In trying to spare you further pain, we may have made things even worse.’

The letter was right.

Jane was bereft and devastated to find out she had buried her baby son without his brain.

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 pats of his body.

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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