Twin baby girl born with incredibly rare condition that means she has no eyes
A mum and dad from Watford welcomed twin girls Maeve and Orla at 36 weeks on 8 April, 2024.
Everything 'seemed normal', according to mum Darrah O’Sullivan, 28, and her fiance, Vince Greenaway, 30, until a paediatrician realised that Maeve hadn't open her eyes, which they described as 'strange'.
"We hadn’t even noticed because she was so tiny, we were fully unaware." Darrah said. "We knew by them saying ‘strange’ and their tone of voice that something wasn’t right."
The next day, doctors discovered that she had been born without both of her eyes due to a rare health condition that affects just one in 100,000 babies - which is called bilateral anophthalmia.
What is bilateral anophthalmia?
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Bilateral anophthalmia is when a baby is born without both of their eyes.
"There’s no treatment that can create a new eye or bring vision back for people born with anophthalmia or microphthalmia." The National Eye Institute says.
"But early treatment can help babies and children with these conditions grow and develop."
The condition could be caused by a change in genes, taking certain medicines while pregnant and coming into contact with harmful things in the environment, the website continues. But most of the time, doctors can't detect why it happened.
Maeve given all-clear from any other health issues
When her condition was initially discovered, her parents had an 'emotional week' worrying about her future, however, she was cleared from any other health issues and Darrah said her daughter is a 'beautiful, happy, thriving little girl' despite being unable to see.
The parent said she will be given conformers, which are plastic shells that help the eye sockets develop to a normal shape and size, which will be replaced with prosthetic eyes when she’s older.
“Maeve is 10 months old now, and I look back and think ‘What on earth were we worried about?’.” Darrah told PA Real Life.
“Maeve is the most beautiful, happy, thriving little girl… so what if she can’t see? She sees the world through a different way but that doesn’t necessarily mean it’s a bad thing. Maeve being blind, or her condition, will never, ever be a taboo subject in our house… we will all learn braille and it will just be such a normal part of our life.
“We don’t want her to ever feel like her condition will stop her doing anything.”
'The best and worst week of our lives'
Vince admitted that 'there was quite a lot of trauma in the first few days' after the discover, as Darrah said: “It was the best and the worst week of our lives wrapped up into one. We didn’t really believe it and we thought there had to be a cure, and they’d fix it, but they couldn’t. The first few days were filled with worrying about her future.”
Thankfully, Maeve was allowed to go home after a week in hospital.
“Maeve and Orla are non-identical twins, but I think we’ll give them the same colour eyes,” the mum said. “When she’s older, she can always decide to change them but all of us have blonde hair and blue eyes.”
To assist her with her mobility and tactile playing, Maeve has three specialists and she'll have to learn braille when she's older. As for reaching milestones such as crawling, Darrah says they'll have to do it 'differently', adding: "But as she gets older, our knowledge of being blind will grow and we’ll keep learning as we go."
To raise awareness of bilateral anophthalmia, Vince is set run the 2025 London Marathon for Macs on April 27 with Darrah’s sisters, Maddie and Chloe.
At the time of writing, they have raised more than £13,000.
Vince said: “The idea came from a few beers and a bit of emotion – obviously, the London Marathon is on TV every year and was on just after the girls had been born.”
Darrah added: “I’m so proud of them all, it’s amazing – Vince gets up at 5am to run, then still goes off to work and helps me with the girls.”
You can donate via the family’s JustGiving page.
Anish Vij