Mum whose twin daughter was born without eyes says child is ‘thriving’ despite extremely rare condition

A mum whose twin daughter was born without eyes has said she is a “beautiful, happy, thriving little girl” despite her extremely rare condition.

Darrah O’Sullivan, 28, and her fiance, Vince Greenaway, 30, had twin girls Maeve and Orla at 36 weeks on April 8 2024.

“Everything seemed normal” for the new parents until a paediatrician noticed Maeve had not opened her eyes.

Doctors discovered the next day she was born without eyes due to bilateral anophthalmia – a condition that affects just one in 100,000 babies, according to the NHS.

After an emotional week “worrying about her future”, Maeve was given the all-clear from any other health issues, and the family from Watford, Hertfordshire, began to adjust to their new way of life and learning how to help their daughter thrive.

Maeve was given conformers – 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, in a shade of blue that matches her twin sister.

Darrah told PA Real Life: “Maeve is 10 months old now, and I look back and think ‘What on earth were we worried about?’

“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.”

Darrah, who like Vince works in management, gave birth to her daughters at 36 weeks, after an “absolute whirlwind” of being induced and then having a C-section.

A few hours later, a paediatrician noted Maeve had still not opened her eyes, describing it 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.”

An ophthalmologist diagnosed Maeve the next day with bilateral anophthalmia, meaning she had not developed eyes.

“There was quite a lot of trauma in the first few days because it just isn’t what you expect,” Vince said.

Darrah added: “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.”

An MRI scan when Maeve was five days old confirmed her eye condition was an “isolated problem”, and with no other health issues she was allowed to go home after a week in hospital.

“We spent a few days processing as a family but ever since then, we’ve been super positive about everything,” Vince said.

Darrah said that when Maeve was old enough for prosthetic eyes, they would choose the colour blue to begin with.

“Maeve and Orla are non-identical twins, but I think we’ll give them the same colour eyes,” Darrah said.

“When she’s older, she can always decide to change them but all of us have blonde hair and blue eyes.”

It has been a “huge learning curve” for the family because they had never heard about bilateral anophthalmia and found most people have never heard of the condition.

“I would say people can be nosy when she’s in the pram or when we’re on holiday,” Vince added.

“We just say she has this condition and try to explain to people.”

The family has received ongoing support from Guide Dogs and Macs, a support charity for people with microphthalmia, anophthalmia and coloboma eye conditions.

Maeve has three specialists assisting her with mobility and tactile playing, and will have help to learn braille when she is older.

Darrah added: “Teaching her how to crawl and all those little things that most babies learn through vision, we just have to do it differently.

“But as she gets older, our knowledge of being blind will grow and we’ll keep learning as we go.”

Through Macs, Vince and Darrah have connected with other parents of children with the condition and are part of a Facebook support group.

“Her specific condition is super rare, but actually being blind isn’t… and there is so much out there to help a blind person navigate the world,” Darrah added.

“We don’t feel like her condition will necessarily hold her back or stop her from doing anything, really.”

To increase awareness of the condition, Vince will run the 2025 London Marathon for Macs on April 27 with Darrah’s sisters, Maddie and Chloe. They have raised more than £12,000 for the charity so far.

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.”

Vince, Chloe, and Maddie have been preparing for months with training sessions of 5-10km during the week and a 20km run on Sundays in preparation.

Vince said: “It’ll be such a huge achievement, and we all just want to raise awareness and money for the charity and the condition.”

To donate to the family’s JustGiving page, visit: justgiving.com/page/runningformaeve.