Article by South West News Service writer Charlotte Penketh-King
A blind girl in the United Kingdom has left doctors baffled after regaining her sight and “curing herself” of a usually life-long brain condition.
Evie-Mae Geurts was registered blind at just a few months old, and when her head started to swell a few months later, her mother Amy, 28, demanded answers. Doctors discovered she had hydrocephalus – the build up of fluid in the ventricles deep within the brain – at just eight months old.
The pressure inside her head was 32 times the normal level. Doctors warned while they could help relieve the pain and buildup, the damage to her brain was done. The continued pressure meant her sight was gone forever, and she’d likely never learn to walk and talk, her mom says doctors told her.
Evie-Mae had a series of brain operations, including shunts fitted and needles prodded through her skull. Against all the odds, not only did her sight return when she was a toddler, but she also learned to walk and talk.
More than that, her hydrocephalus bizarrely disappeared last year.
Usually hydrocephalus is a life-long condition which can’t be cured and requires shunts to drain fluid from the brain forever. Evie-Mae, now 7, is top of the class and can see perfectly without any glasses. She’s thriving at her home in Bristol, England alongside her mom, dad Martin, and her two brothers — Archie, 8, and George, 5.
“Evie is phenomenal. We’re so proud of her,” Amy tells South West News Service. “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. The doctors shone a light in her eyes and found that she had no visual responses, and said she was blind. With Evie’s head continuing to swell, Amy repeatedly took her back to the doctors with concerns it could be hydrocephalus.
“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,” she explains. “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 at eight months. 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 the emergency room before Evie was checked and finally told that her soft spot was full of fluid.
She had surgery the next day.
“When she came out of [surgery], the doctor said it was lucky that I brought her in when I did because she had really high pressure in her brain,” Amy recalls. “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,” Amy continues. “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, which combines signing with symbols and speech, she even started to speak.
“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,” says Amy. “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, — I’ll never forget it,” says Amy.
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.
“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!” explains Amy. “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. Thankfully, the surgery was a success, but Evie contracted viral meningitis and had to be hospitalized with antibiotics for four more days.
Incredibly, Evie, now 7, 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.
“They can’t believe it,” her proud mother says. “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.”