"Living with a Death Sentence": The Hidden Legacy of Cadaver Implants

When Natalie Bralee-Brett was just three years old, she underwent surgery at Great Ormond Street Hospital for spina bifida. Her mother was told the operation could improve and prolong her daughter’s life. What she did not know was that surgeons would insert a membrane taken from human cadavers into Natalie’s spinal cord — a procedure widely used at the time, but now linked to devastating, long-term consequences.

Decades later, Natalie has been diagnosed with one of the rarest brain diseases in the world: iatrogenic cerebral amyloid angiopathy (ICAA). She describes it starkly as “living with a death sentence.”

A Family Affected

Natalie’s condition has caused bleeding in her brain, severe headaches, memory loss, and repeated falls. She now lives with the constant fear of a catastrophic stroke or developing dementia.

Tragically, her younger brother Neil — who underwent the same surgery for spina bifida in 1980 — has also been diagnosed with ICAA. He is only 45, can no longer work, and is showing signs of Alzheimer’s disease. Natalie and Neil are the only siblings recorded on the international ICAA register, which has just 52 confirmed cases worldwide.

Their mother Maureen says she is “heartbroken.”

What Is ICAA?

ICAA is caused by amyloid-beta proteins building up in the blood vessels of the brain, weakening them over time and leading to bleeding, seizures, and neurological decline.

Doctors now know that contaminated neurosurgical materials — such as dura mater grafts taken from cadavers — can transfer these proteins into a patient’s body. The disease may remain hidden for decades before symptoms appear.

The procedure was common in the 1970s and 1980s in the UK, Europe, and the US. Tens of thousands of patients are believed to have received similar grafts, but the true number living with ICAA today remains unknown.

A Forgotten Tragedy

This isn’t the first time cadaveric dura mater grafts have been linked to disease. In the 1990s, they were found to transmit Creutzfeldt-Jakob disease (CJD), leading the World Health Organization to advise against their use. Yet for families like Natalie’s, the long-term risks are only now being uncovered.

As one leading neurologist put it: “The ‘I’ in iatrogenic stands for ‘I, the doctor caused the problem.’”

Why This Matters

Natalie and Neil’s story is not only heart-breaking, but a reminder that medical innovation sometimes carries unseen risks. Patients deserve transparency, answers, and support — even decades after their treatment.

For those living with ICAA, there is currently no cure. Diagnosis is possible thanks to modern MRI scans, and an international register has been set up to track cases. But for patients and families, day-to-day life remains uncertain and frightening.

Forgotten Patients, Overlooked Diseases

Stories like Natalie’s embody what our charity stands for. Ultra-rare conditions like ICAA can leave patients isolated, overlooked, and searching for answers. By raising awareness, we hope to shine a light on their struggles and encourage more research, recognition, and support.

If you or someone you know is living with an overlooked or unexplained condition, we want to hear your story.