'My toddler could go blind because her eyes won't stop growing'
Watch: Tot at risk of blindness due to a rare illness meaning her eyes won't stop growing
A mum has revealed that her toddler could be at risk of blindness due to a rare condition meaning her eyes won't stop growing.
Aretria Bice, 21 months, was born with big, blue eyes, which friends, family and strangers all found adorable.
But at six months old, in May 2023, one of Aretria's baby blues turned "milky" and any light caused her to scream in pain.
After being rushed to hospital she was diagnosed with a genetic abnormality which saw extreme and growing pressure on the optic nerve, causing her eyes to swell.
Aretria was born on October 20, 2022, with "cartoon bug eyes", as her parents, Louise, 35, and Connor Bice, 30, lovingly refer to them.
They never imagined her eyes would be a concern, until Aretria was six months old and one of her eyes clouded over.
The couple took their daughter to hospital and doctors identified high pressure in her eyes from a fluid build up, but couldn't work out the cause.
After visiting several other hospitals to see specialists, Aretria's condition was finally diagnosed as bilateral congenital glaucoma.
"Doctors said she had been exposed to high eye pressure from birth because her fluid drainage system didn't form properly in her eye when she was still in the womb," Louise, a stay-at-home mum from Mansfield, Nottinghamshire explains.
The specialists - who had only seen a handful of cases of the condition - revealed Aretria would need a surgery called a goniotomy to lower the pressure.
The toddler has since had a string of urgent surgeries, with the last two attempting to insert a tube to drain the excess fluid from her eyes.
But each procedure failed, and one even left Aretria crying blood.
Her mum explains that due to major damage to her optic nerves her daughter can only see things closer than 8cm.
"Aretria has had five surgeries to try to stabilise the optic pressure which would stop her vision damage, but things keep getting worse," she explains.
"She got a tube put into her right eye in March to relieve the pressure but it didn't work and she even cried blood after because her stitches came loose.
"If she got excited or screamed, it would burst and pour," Louise continues.
"It was red pouring out of her eyes, I felt like she was out of one of those scary movies."
Due to her condition Aretria wears glasses 24 hours a day.
"She even has to wear them at night because if she wakes up and can't see, she is terrified," her mum continues.
"She has had so many surgeries and appointments that she has the biggest fear of hospitals, and sobs even just at the smell of it."
Doctors have said Aretria's eye pressure is continuing to rise with her eyes also getting bigger - so it's likely she will need further surgeries, but the family fear that if a resolution to the fluid build up in their daughter's eyes isn't found soon, she will be left blind.
Aretria's prescription in both eyes is already -13, making her severely near-sighted and the damage to her optic nerve is continuing to worsen.
She is also has extreme sensitivity to light and needs to wear dark tinted glasses even in dim light.
"I worry if her vision continues deteriorating, she won't be able to go to mainstream school," Louise explains.
"It's such a cruel condition and yet I still have never met another parent in person whose child is living with the same.
"When I tell people about what she has, they have never even heard of it."
The couple hope that by telling their daughter's story other parents to look out for the signs.
"Having these big, beautiful eyes isn't always a good thing," Louise explains. "If people ever compliment them now I feel very awkward.
"Now, whenever my friends put their babies photos on social media, I'm always looking at their eyes to check they look normal size.
"I don't want anyone else to go through what my little girl has - the sooner people spot the signs, the better."
While Aretria is now waiting to go under the knife for the sixth time, the family are trying to look to the future.
"Her eyes won't shrink back down, but we are hopeful at some point things will stabilise so her vision doesn't get worse," Louise says.
"As soon as she was diagnosed we knew this would be her whole life, but we have no idea what the future holds for her."
Glaucoma in babies and children
About five in 100,000 children are born with glaucoma, or develop it in childhood.
The most common glaucoma in babies and small children is primary congenital glaucoma.
Glaucoma UK says it occurs when the eye hasn’t developed properly in the womb and this leads to issues with the flow of fluid out of the eye.
If the fluid is unable to drain effectively, it builds up inside the eye and causes the eye pressure to rise.
This causes stress to the optic nerve, and may lead to permanent damage to vision.
Glaucomas of this type tend to run in families.
Secondary glaucomas in babies and children are usually the result of another condition.
Symptoms of childhood glaucoma include:
large eyes
cloudy eyes
sensitivity to light
poor vision and jerky eyes
squint
watering eyes
When it comes to treating childhood glaucoma most babies and children have to be examined under anaesthetic.
Initially if their eye pressure is found to be raised, then surgery will usually be carried out at the same time to save a further anaesthetic.
Additional reporting SWNS.
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