New hope for boy with no eyes

Mar 9 2008 by Catherine Evans, Wales On Sunday

CRADLING her newborn baby boy in her arms, Anna Batten waited for him to return her loving gaze.

But little Thomas never opened his eyelids.

Still, Anna, 25, and husband Chris, 30, were over the moon with their bundle of joy.

And it was days before they learned the devastating truth – Thomas was one of only 35 babies born each year in the UK to suffer from a genetic condition called bilateral anophthalmia – meaning he had no eyes.

“At first the doctors at Nevill Hall didn’t realise and just said it was strange he was still asleep,” said Anna.“Then one of them pointed out that no-one had seen Thomas with his eyes open, so they ran some tests.”

Gently, the doctor explained how Thomas was suffering from bilateral anophthalmia.

It meant his eyes had stopped developing in the womb. Scans showed they were the size of a pinhead.

“I was so tired after the birth I found it all hard to believe,” said Anna.

“They lifted his eyelids and showed us and they tried to explain as best they could. When they peeled back his eyelids, where my son’s eyes should have been was an empty space.

“I was shocked. It’s not something you expect to be missing.”

As his parents agonised over what the future held for their little boy, Thomas remained blissfully unaware of his disability. But his ordeal was about to begin.

“When we went to see a specialist in London – Dr Nikki Ragge – she told us they would have to use specialist equipment to stretch Thomas’ eye sockets and make room for artificial eyes,” said Anna.

“We were told that if they didn’t fill up the space, his entire face would collapse in on itself. The news made me feel physically sick.”

Every six weeks the family returned to the specialist in London, a small piece of button-shaped rubber was pushed into Thomas’ eye sockets.

“The idea was that the doctors would gradually increase the size of the button, stretching the sockets and making room for the artificial eyes,” Anna explained.

“We were told the whole process could take years.”

In December, Thomas was fitted with specially-made prosthetic eyes, using a harder acrylic button.

“Inserting this is so painful they had to put Thomas under anaesthetic to do it,” recalls Anna.

“As Thomas grows they will have to make adjustments every few months.”

But Anna can’t believe how the operation has made the world of difference to 21-month-old Thomas.

“He looks a lot more normal and can actually open his eyes now,” she said.

“He doesn’t get funny looks from other people now. It’s a lot better for him. It means the world that he can finally open his eyes, even if he won’t be able to see out of them.”

Thomas still has many mountains to climb as he continues to grow.

“When Thomas was a small baby I had no trouble with him,” said his mum.

“But now as he gets older and moves around more, I know his blindness will prove an issue.

“He isn’t developing as well as other children. He still can’t walk or crawl. He just rolls about on the floor.

“It frustrates me that my beautiful child will never develop as quickly as the little lad next door. When I see him walking, I wonder why Thomas can’t.

“I know it’s because he can’t see the world, so he won’t learn as quickly.

“But he’s doing so well – there are so many things he does that I never thought he could do, so I try not to focus on the things he can’t do. He will get there eventually. I’ll make sure he doesn’t miss out.”

For now the couple, from Abergavenny, are just enjoying spending time with their son.

“Regardless of his disability he’s such a happy little boy, he loves music and has always got a toothy grin on his face,” said his mum. “I’m just looking forward to the day he has a smile in his eyes too.”

Although they remain realistic about Thomas’ condition, the couple hope that one day in the future, doctors may be able to do more for him.

“Thomas does react to shape and light,” says Anna. “If I switch on a bright light he will cover up his eyes with his hands so I’m hoping, with technological advances, they might be able to restore his sight one day.”

catherinemary.evans@mediawales.co.uk