A TODDLER is at risk of blindness due to a rare condition that means her eyes won’t stop growing – and has left her crying blood.
Little Aretria Bice, 21 months, was born with big blue eyes, which friends, family and strangers all found adorable.
SWNSAretria Bice, 21 months, has bilateral congenital glaucoma, a genetic abnormality which causes extreme and growing pressure on the optic nerve[/caption]
SWNSMum Louise Bice, 35, noticed that one of Aretria’s eyes was cloudy when she was 6 months[/caption]
SWNSThe tot has undergone five surgeries to fix the condition and is at risk of blindness[/caption]
But when was just six months old in May 2023, one of Aretria’s baby blues turned “milky” and any light caused the tot 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.
She had a string of urgent surgeries – the last two to insert a tube to drain the excess fluid from her eyes.
But each one failed, and one even left her crying blood.
Now, Aretria is waiting to go under the knife for the sixth time.
Her worried parents, Louise, 35, and Connor Bice, 30, have been told Aretria’s eyes will never get smaller once they’ve grown in size.
They’re becoming desperate for a solution as their daughter – who is already extremely short-sighted – will lose more vision as time goes on.
Louise, a stay-at-home mum from Mansfield, Nottinghamshire, said: “Aretria has major damage to her optic nerves – she can only see things closer than 3in (8cm).
“She has had five surgeries to try to stabilise the optic pressure which would stop her vision damage, but things keep getting worse.
“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.
“She 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.
“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.
“Her eyes won’t shrink back down, but we are hopeful at some point things will stabilise so her vision doesn’t get worse.
“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.”
‘A CRUEL CONDITION’
Aretria was born on October 20, 2022, with her “cartoon bug eyes”, as Louise and Connor lovingly refer to them.
They never considered her eyes would be a concern until the tot was six months old and one of her eyes clouded over.
Louise and Connor took her to hospital and doctors identified high pressure in her eyes from 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.
Louise said: “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.”
The specialists – who had only seen a handful of cases of the condition – revealed she would need a surgery called a goniotomy to lower the pressure.
It was red pouring out of her eyes, I felt like she was out of one of those scary movies
Louise Bice
She went under the knife for the first time in June 2023 at Birmingham Children’s Hospital, West Midlands, in a four-hour procedure.
Aretria’s gruelling recovery process involved having eye drops administered six times a day for a month and wearing protective eye shields for a week.
But doctors revealed at her post-op that the surgery failed.
She had further unsuccessful surgeries in August 2023 and October 2023.
In March 2024, doctors said they would have to insert a tube to drain fluid instead, but due to how sensitive her eyes were, the stitching caused her to cry blood.
Louise said: “If she got excited or screamed, it would burst and pour.
“It was red pouring out of her eyes. I felt like she was out of one of those scary movies.”
The poor tot needed to go under the knife for a fifth time to have the stitches removed.
And yet doctors have said Aretria’s eye pressure keeps rising, and her eyes keep getting bigger – so further surgeries will be on the cards.
SLOW DETERIORATION
Louise fears if a resolution to the fluid build up in her 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.
Louise said: “I worry if her vision continues deteriorating, she won’t be able to go to mainstream school – that’s a whole other ball game.
Signs of congenital glaucoma
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 called primary congenital glaucoma.
It occurs when the eye hasn’t developed properly in the womb, leading to issues with fluid drainage from 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. A diagnosis of bilateral congenital glaucoma means both eyes are affected.
Glaucoma is referred to as secondary if it’s the result of another condition – such as Axenfeld-Rieger’s Anomaly, which causes developmental issues with various parts of the eye, or Peter’s Anomaly characterised by developments in the lens and cornea.
Symptoms of glaucoma in babies and children include:
Large eyes – the outer coat of a child’s eye is much softer and more flexible than that of an adult, meaning it may expand if pressure rises
Sensitivity to light – children with raised eye pressure often become sensitive to light
Cloudy eyes – as pressure rises, fluid is pushed into the cornea making it waterlogged and cloudy. This clouding can clear if the pressure is reduced but it may take several months
Poor vision and jerky eyes – if raised pressure in the eye has caused clouding of the cornea or pressure on the head of the optic nerve, vision may be poorer than usual and children may develop jerky eye movements
Squint – in some children, the eye with poorer vision may be seen to tun inwards or outwards
Watery eyes – if eye pressure is too high, it cause a glare from lights and swelling of the cornea, leading to watery eyes
Source: Glaucoma UK
“It’s such a cruel condition – and yet I still have never met another parent in person whose child has the same condition.
“When I tell people about what she has, they have never even heard of it.”
Louise wants to encourage other parents to look out for the signs and says she tries to raise awareness to everyone she meets.
She said: “Having these big, beautiful eyes isn’t always a good thing – 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.”
SWNSAretria is already severely near-sighted and has to wear dark glasses 24 hours a day[/caption]
SWNSHer mum fears she won’t be able to attend a regular school if her vision continues to deteriorate[/caption]