A woman infected with an incurable brain disease due to an NHS operation when she was three years old has told Sky News she is “living with a death sentence”.

Natalie Bralee-Brett was born with spina bifida, a birth defect caused by a gap between the brain and spinal cord.

In 1975, her mother Maureen was told by doctors at Great Ormond Street Hospital that Natalie would have an improved and prolonged life if they operated on her using a new procedure. 

But this, unknown to Maureen at the time, involved taking membrane taken from dead bodies and inserting it into Natalie’s spinal cord. Now nearly 40 years later this treatment is the very thing that could kill her.

It has caused microbleeding on her brain, leading to memory loss. Natalie, 53, is also falling over constantly and suffers debilitating headaches. 

It also means Natalie is at high risk of dementia and could suffer a catastrophic stroke at any time. 

“Living with a death sentence, this is the only way I could describe it,” Natalie told Sky News. 

“Because every day, if you get a headache, you’re thinking ‘is this a sign of an episode that is linked to this problem? Is it a stroke?'” 

“I want to know why I’ve got this problem. And that probably makes me more angry than actually having to deal with this condition.”

Search for answers

Sky News has been following Natalie’s case for more than a year, and we have spoken to experts around the world to try to help Natalie get answers.

Natalie was given a dura mater graft in 1975. This is a piece of membrane collected from dead bodies. Its use is intended to protect the spinal cord and prevent fluid from leaking.

But over years, proteins already in the membrane can build up and cause plaques, leaving patients at high risk of diseases like Alzheimer’s. It can also make them vulnerable to strokes and brain haemorrhages. 

The procedure was common in the 1970s in the UK, across Europe and the US.

It’s thought tens of thousands of patients around the world might have undergone the procedure, but it is not known how many might be suffering the same life-limiting and potentially fatal consequences today. 

Natalie was diagnosed with a brain tumour in 2009, aged 37. A year later it was confirmed she had epilepsy. But it wasn’t until 2022 that Natalie was diagnosed with iatrogenic cerebral amyloid angiopathy (ICAA). 

Her family have now suffered another devastating blow.

Natalie’s brother Neil, who also had surgery for spina bifida in 1980, was diagnosed with ICAA in July. He’s no longer able to work and is suffering from Alzheimer’s.

The siblings were born with the same condition, underwent the same procedure, and are now infected with the same incurable brain disease. 

Natalie and Neil, 45, are the only siblings identified on the international ICAA register, which has just 52 confirmed cases.   

Natalie says her mother Maureen is “heartbroken”. 

ICAA cases ‘a heartbreaking tragedy’

Cases of ICAA have been identified in the Netherlands, Australia, Japan, Croatia, Austria, Italy, Spain, Slovenia, and the US.

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Harvard Professor Steven Greenberg is one of the world’s leading ICAA experts. 

“We hope and believe the numbers will be limited,” he said. “The hope is that we’re talking hundreds.”

But for those who are impacted, “it is a heartbreaking tragedy, and we feel it very much as the healthcare providers taking care of them”.

ICAA is caused by a medical examination or treatment, relates to the brain, involves amyloid proteins that can stick together and cause a range of problems for major organs – and that is a disease of the blood vessels. 

Doctors believe there are three possible causes of the illness: cadaveric material introduced into a body during surgery, the use of human growth hormones containing cadaveric material and surgical tools not sufficiently sterilised. 

Professor Greenberg explained: ”When I was in medical school, one of my professors said ‘the I stands for I, the doctor caused the problem’.

“And in the case of iatrogenic CAA, this is kind of a heartbreaking echo of an era when it appeared that a good neurosurgical procedure was to use tissue from human cadavers to close defects in the nervous system.

“And I am not a surgeon and I certainly wasn’t practising at the time. But my understanding is that it appeared to be good natural biological material for closing up areas and then had this unexpected and tragic effect of introducing some kind of protein that would later cause disease in the brain.”

‘I deserve answers’

Natalie’s health is steadily deteriorating. The bleeding on her brain is causing memory loss, and she dreads what the next few months will bring. 

“The pattern seems to be every time I go for a scan, I’m being shown to have more bleeding,” she said.

“And the last scan showed that I also had inflammation. It’s always hanging over you because you get a headache, and you think ‘is this going to turn into something worse?’

“And because of being at risk of a stroke it’s constantly there, and it’s a condition that is going to get worse.”

Natalie’s agony is further compounded by the lack of information.

She wants to know more about the donor of the diseased membrane implanted into her brain. But there is no record of where the dura mater came from.

And most of the time these grafts were made up from more than one body.

Natalie said: “I think I deserve answers. And if you’ve got something wrong with you, you want to know it’s human nature. You want to know why you’ve got this problem.”

Diagnosing ICAA has only become possible due to advancements made in MRI scanning.

Specialists including Professor Greenberg have set up the international register so any neurologist suspecting ICAA can flag cases to their peers.

This isn’t the first time cadaveric dura mater grafts have infected patients.

The World Health Organisation advised against their use in 1997 after it was discovered they had been giving patients Creutzfeldt-Jakob disease (CJD) which at the time was also being spread by eating cattle infected with BSE or ‘mad cow disease’.

There were 228 of these confirmed cases worldwide.

Dura mater grafts were used in more than 20 surgical procedures over 25 years, with the last known use in the UK in 1992.

‘Something is seriously wrong’

Simon Stratford was only 34 and a father of four young children when he died in April 2003.

That was nearly 16 years after having surgery to remove a brain tumour. During the operation a Lyodura graft was inserted into Simon’s brain. The membrane was infected with CJD and a coroner’s inquest found that it was this procedure that caused Simon’s death.

Speaking exclusively to Sky News, his widow Colleen said she warned doctors treating her husband that she knew he was dying.

“I kept saying to the doctors he’s getting worse and something seriously is wrong, and you know, Simon did say to me at that point he thought he was dying.

“He had a brain tumour removed which saved his life and then was given a life sentence. They said it was the Lyodura dura mater that took his life.”

Sky News asked B. Braun, a major German manufacturer which made Lyodura, to help with our investigation. They declined to comment on the link between dura mater grafts and ICAA.

For more than a year we have been speaking to experts around the world. Scientists in Europe declined to be interviewed. Natalie’s own medical team in the UK also refused to be interviewed.

The risks posed by the grafts are being better understood but the scale of the damage they have caused is not.

Some specialists who spoke to Sky News but did not want to be named are keen to stress that surgeons who carried out operations using these grafts were acting on the best available medical evidence to improve the length and quality of patients’ lives.

Natalie had her operation at Great Ormond Street Hospital. It’s likely, at least hundreds of patients would have undergone the same procedure.

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Following our investigation, its medical director Dr Sophie Varadkar told Sky News: “We understand that this situation may be deeply worrying for former patients who believe they could have been affected.

“At the time, this type of product was commonly used in surgical procedures worldwide, and sadly, the risks associated with it were not yet understood.”

“For any of our former patients who think they may be affected, we will support you with getting access to your medical records to allow you to discuss your concerns with your current doctors.”

The Department of Health told us concerns around ICAA – including new forms of transmission – were being investigated.

“The Advisory Committee on the Safety of Blood, Tissues and Organs is currently considering this issue with a view to providing further advice to the Government,” a spokesperson said.

“We encourage anyone with concerns about historical treatment to speak with their GP or specialist healthcare team for appropriate support and guidance.”

Do you have a story to share with us? Contact NHSstories@sky.uk