A little girl who was registered blind as a baby has astonished doctors after regaining her sight and ‘curing herself’ of a usually life-long brain condition.
Evie-Mae Geurts, now seven, who lives in Bristol with mum Amy, 28, was registered blind at just a few months old and was diagnosed with hydrocephalus at eight months.
The pressure inside her head was 32 times the normal level, and doctors warned while they could help relieve the pain and build up, the damage to her brain was done.
Doctors told Evie’s mum Amy, 28, the continued pressure meant her sight was gone forever, and she’d likely never learn to walk and talk.
Against all the odds, not only did Evie’s sight return when she was a toddler – she also learned to walk and talk and her hydrocephalus inexplicably disappeared last year.
Evie-Mae Geurts, now seven, who lives in Bristol with mum Amy, 28, was registered blind at just a few months old and was diagnosed with hydrocephalus at eight months. Doctors said the brain condition meant her sight was gone forever, and she’d likely never learn to walk and talk
Against all the odds, not only did Evie’s sight return when she was a toddler – she also learned to walk and talk and her hydrocephalus inexplicably disappeared last year
Full-time mum Amy said: ‘Evie is phenomenal. We’re so proud of her. The doctors admitted because of a delay in diagnosis, they weren’t sure what would happen.
‘They didn’t know if she’d ever be able to see or walk or talk. Now, she’s living shunt free, talking, walking and she’s ahead of her age in learning.
‘They can’t understand – she was globally delayed and now all of a sudden, she’s very forward. She’s an amazing little girl, and so brave.’
Amy first took Evie to Bristol Children’s Hospital after a bad cold left her with really red eyes in 2014.
After Evie’s diagnosis with hydrocephalus – the build up of fluid in the ventricles deep within the brain – she had a series of brain operations – including shunts fitted and needles prodded through her skull
Evie, pictured in hospital, has astonished doctors after her usually life-long condition which can’t be cured and requires shunts to drain fluid from the brain forever, disappeared
In January 2021, medics discovered Evie’s headaches had returned because the no longer needed a shunt which had been fitted inside her brain to drain the fluid into her bladder
The doctors shone a torch in her eyes and found that she had no visual responses, and said she was blind.
With Evie’s head continuing to swell, mum Amy repeatedly took her back to the doctors with concerns it could be hydrocephalus.
She said: ‘I knew of hydrocephalus because my brother has it, and I thought that might be why she had no vision, but I was told I was wrong because she was a smiley baby.
‘Even though she was pulling her hair out, I was told that if she did have hydrocephalus, because she’d be worse.
Desperate, Amy turned to her brother’s neurosurgeon for help who diagnosed Evie, aged eight months.
Evie-Mae, now seven, is top of the class and can see perfectly without any glasses. She is pictured with mum Amy
Incredibly, Evie, now seven, pictured at home in Bristol, is now living life as a healthy girl with perfect vision
She is still undergoing eye tests every six months to monitor her progress but doctors have been amazed
Amy returned to Bristol Children’s Hospital in April 2015 with the diagnosis, and said she refused to leave until Evie was seen.
She claims she waited ten hours in A&E before Evie was checked and they were finally told that her soft spot was full of fluid.
She had surgery the next day.
Amy said: ‘When she came out of theatre, the doctor said it was lucky that I brought her in when I did because she had really high pressure in her brain.
WHAT IS HYDROCEPHALUS?
Hydrocephalus is a build-up of fluid in the brain, which can damage tissue.
Aside from an abnormally-sized head, other symptoms can include headache, nausea, vomiting, confusion and vision problems.
Hydrocephalus’ cause is usually unknown but may be due to issues with cavities in the brain or an underlying health problem that affects blood flow, such as heart disease.
It can also be acquired by damage to the brain due to a head injury, stroke or tumour.
Treatment is shunt surgery, which involves implanting a thin tube into the brain to drain away excess fluid to another part of the body where it can be absorbed into the bloodstream.
If untreated, hydrocephalus can be fatal due to increased pressure compressing the brainstem, which is responsible for regulating heart rates and breathing.
A patient’s prognosis after surgery depends on their age and general health.
Source: Brain and Spine Foundation
‘It’s such a horrible pressure. The pressure in your brain should be at zero, and on a bad migraine, it’ll be five, and Evie’s was 32 and higher when they measured.
‘She could have died.
‘They said there was a chance that she could never walk or talk because a delay in diagnosis can prevent children from being able to walk or talk. I was devastated.’
Evie had a shunt fitted inside her brain to drain the fluid into her bladder.
She returned home and over the next year, she slowly started to gain vision as the shunts worked to drain the pressure from her brain.
Amy said she was told this is highly unusual for a child who was left untreated for such a long time.
Evie began walking at two years old and after learning Makaton, she even started to speak.
Amy said: ‘The doctors admitted because of a delay in diagnosis, they weren’t sure what would happen. They didn’t know if she’d ever be able to see or walk or talk.
‘She learnt Makaton and then eventually, she started speaking, so, amazingly, she gained vision, was signing and then speaking.
In April 2019, Evie started started getting headaches again and doctors had to drill through her skull to put in a needle.
The pressure was 40 times the expected amount, and it turned out her shunt was blocked, so she was fitted with a new one.
‘The scream she let out when they removed the needle,’ said Amy. ‘I’ll never forget it.’
In January 2021 the headaches returned and they feared the worst.
But bizarrely medics discovered they had returned because the no longer needed the shunt, which was ‘splitting’ the no longer pressured ventricles.
Amy said: ‘The doctor couldn’t believe it – he thought we’d be in and out of hospital every few years because the shunts kept blocking, but it turned out that somehow she’d cured herself!
‘He said he’d never seen it before and certainly didn’t expect to see it in her.’
Doctors made the decision to remove both of the shunts inside Evie’s brain – an uncommon procedure due to the risk of shunt removal causing a stroke or bleed on the brain.
Proud full time mum Amy, who lives in Bristol with Evie, her husband quarry operative Martyn Geurts, 49, and her two sons Archie, eight, and George, five, said: ‘Evie is phenomenal’
Thankfully, the surgery was a success, but Evie contracted viral meningitis and had to be hospitalised with antibiotics for four more days.
Incredibly, Evie, now seven, is now living life as a healthy girl with perfect vision.
She is still undergoing eye tests every six months to monitor her progress but doctors have been amazed.
Proud Amy said: ‘They can’t believe it. They had to shave her hair back to access the devices so she refers to herself as Rapunzel.
‘In the hairdressers, they told her she’d been brave and she said just like Eugene cuts Rapunzel’s hair to save her in Tangled, the doctors cut my hair off to save me.
‘Evie is phenomenal.’