Mum whose baby was diagnosed with rare cataract after spotting ‘small cloud’ in eye at 10 weeks ‘races’ to save sight

A mother whose daughter was diagnosed with childhood cataracts at 10 weeks old after spotting a milky mark on her pupil has warned other parents they must act quickly to save their children’s sight.

Lotti McKenna, 33, head of fitness and yoga at Blok, from Walthamstow, East London, noticed a “small cloud” in the middle of her daughter’s eye just a few weeks after giving birth in September 2023.

Beatrix was diagnosed with a congenital cataract in her left eye at 10 weeks old after being referred to Whipps Cross Hospital, a rare birth defect that can cause blindness over time without urgent surgery.

A few weeks later, Beatrix underwent a two-hour surgery under general anaesthetic during which doctors removed the lens in her left eye.

As a result, she now wears specially adapted glasses or contact lenses, but if she had been diagnosed a few weeks earlier, her chances of not going blind would have been higher.

Lotti and her husband, Ben, 36, who works in financial services, had expected the situation to be remedied quickly but were told Beatrix will have to wait until she is at least eight years old before she can have an artificial lens fitted but, even then, there is still a chance she may go blind in her left eye.

“It is relatively common in older people but it’s important for parents to understand that it can affect babies too and that the speed of diagnosis is crucial,” Lotti told PA Real Life.

“It’s really difficult to wrap your head around having to wait eight years, so you just have to take it one day at a time.”

The couple welcomed their daughter Beatrix on September 16 2023 but a few weeks later Lotti sensed there was a problem with her eyes.

“My mums’ spidey sense was going, ‘something isn’t quite right here’,” explained Lotti.

“It just looked like the light was reflecting off her eyes in different ways.

“Now that I know what I’m looking for, you can actually see it in photos from when she was probably only like a week old.

“But when you don’t know, it just looked like there was something not right with her eyes.

“It was literally a small cloud in the middle of the pupil.”

When they attended Whipps Cross Hospital in early December, Lotti said she could tell by the doctors’ reaction it was serious.

“We had that really horrible moment when you’re sat in the room and suddenly the mood changes,” said Lotti who was expecting the doctors to carry out a standard eye test.

“That’s when someone said, ‘I’m just going to get someone to have a look, I’ll be back in a sec’, and I knew something wasn’t right.

“That’s when they told us it was a cataract … and it doesn’t need emergency surgery but it’s very, very urgent surgery.”

Beatrix was diagnosed with a congenital unilateral cataract, a rare condition, which affects about three in every 10,000 babies born in the UK each year according to the NHS, and can cause serious vision problems or blindness.

“It had been missed when she (Beatrix) was born because it’s so rare and very hard to spot,” said Lotti.

“With unilateral cataracts, from the moment the baby is born, the race is on to try and get it diagnosed and removed as quickly as possible.

“All the really important development of the eye is happening in the first 12 weeks, and so the operation can happen as early as seven weeks.

“But because she was diagnosed at 10 weeks it could have a serious impact on the development of her eye.”

At first, Lotti thought removing the cataract would be a simple procedure given that her grandmother had two removed.

“Initially, I thought it wouldn’t be that serious because they are quite common in older people, and even though they may be rare in babies, I thought they’ll just be removed and then that will be the end of it,” she said.

“Then, we did the classic thing where we sat in the waiting room and my husband, Ben, Googled it and was like, oh no, this is actually a lot more serious.”

The major concern is that Beatrix’s cataract could interfere with the normal development of her eye.

She was referred to Great Ormond Street Hospital where, on December 19, Beatrix underwent a two-hour operation under general anaesthetic to remove the lens in her left eye.

“The next morning we were given a mountain of ‘eye admin’, like three different types of drops that needed to be done at different times of day,” said Lotti.

Beatrix received her first pair of glasses at just 13 weeks old and a prescription for contact lenses.

“The prescription of her glasses is +26 and, like, I would really struggle getting around the house without my prescription and I’m -2, so that gives you a bit of an indication of how little she can see without them,” said Lotti.

“She basically can’t see anything without them.”

Lotti said the first couple of months were “pretty tough” as Beatrix was not keen on her new specs.

“Trying to keep glasses on a baby for the first time, dressing her eye at night so that she doesn’t scratch it, it was a lot to get our heads round,” she said.

As part of her rehabilitation, Beatrix also has to wear an eye patch over her left eye so that her brain registers the other one is still working properly.

Unfortunately, she is too young to receive an artificial lens as her eye is still too small, so will have to wait until she is at least eight years old.

Even then, how much Beatrix will be able to see will depend on how her eye develops over the coming years and therefore remains uncertain.

“They (the doctors) are being super cautious in terms of making sure that we don’t get our hopes up about what her vision is going to be like in that eye,” said Lotti.

“The risk is that she goes completely blind in her left eye, like that’s the worst case scenario.”

The couple praised Great Ormond Street Hospital for their care and support over the past year.

They have decided to run the Royal Parks Half Marathon with Beatrix’s godmother, English actress Stefanie Martini, to help raise funds for the hospital.

They have so far raised more than £1,960 on JustGiving.

“Once I put the story out there, we have received so much support, it’s been amazing.

“Thank you to everyone who has donated, it means the world to us.”

To support Lotti’s fundraising efforts visit: www.justgiving.com/fundraising/lottimckenna