'I lived for 29 years with a hidden brain condition' says Surrey mum
37 year old Michaela spent nearly three decades with undiagnosed hydrocephalus
A mum from Surrey is pushing for change after discovering she had been living with a brain condition for nearly three decades.
37 year old Michaela Ingram Fuller spent 29 years suffering from depression, tremors, changes in bladder function, and behavioural challenges because she unknowingly had hydrocephalus, which causes fluid to build up in the brain.
Michaela was diagnosed in 2018 following an episode where she collapsed and temporarily lost memory of her husband.
Within the hospital, she found out she had a significant build-up of fluid on her brain.
She said, “I’d never heard the word hydrocephalus before then, which I think goes to show how little people know about it.
“I think I was able to survive with the build-up of pressure for so long because it happened over such a long period of time. The neurosurgeons said my brain had adapted, and that’s how they decided that my hydrocephalus must have been there from birth.
“They didn’t know how I was still functioning – but I was. I was in a normal job, I had a boyfriend, I went out with my friends, I had hobbies.”
What is hydrocephalus?
Hydrocephalus results in an abnormal build-up of cerebrospinal fluid in the brain, leading to increased pressure that can cause lifelong damage if untreated.
It affects around one in 770 babies in the UK and often requires surgery.
Regular routine checks, such as head circumference measurements, can provide crucial early clues for potential issues and, ideally, prevent conditions from being missed.
In Michaela's case, aqueductal stenosis—a narrowing of one of the brain's fluid-draining channels—was the underlying cause.
A new mum on a mission
Now, as a mother to four-month-old Daisy, Michaela is advocating for routine infant head measurements as an important tool for early hydrocephalus detection.
She is partnering with Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) to champion the Get-A-Head campaign.
An unusually large or rapidly growing head in infants can be an early warning sign for hydrocephalus.
The UK routinely offers two head measurements in the UK, once at birth and once at the six to eight week check. In other European countries like Norway and Finland a baby's head is measured 10 to 11 times within their first year.
The charity aims to educate new parents and parents-to-be about the importance of measurements during a child’s first year.
Harry's Hat have also met with Health Secretary Wes Streeting and are awaiting an update from the UK National Screening Committee.
Michaela said, “Even though I have hydrocephalus, I didn’t know that measuring a baby’s head is one of the ways to find it. I don’t think there’s enough explanation around why these measurements are done for expectant mothers.”
CEO of Harry’s HAT, Caroline Coates, highlighted the importance of early identification, asserting, “No one should have to wait decades for a diagnosis, especially when simple, routine checks - like measuring a baby’s head - can provide crucial early clues.”
Michaela is penning a book about her journey with hydrocephalus, hoping to educate others and potentially aid them in securing an earlier diagnosis.
She hopes to complete it by the end of the year.