Twin boy born with brain outside skull celebrates 10th birthday despite one hour life expectancy

By Charlotte Nisbet

A twin boy who was given just one hour to live after being born with his brain outside of his skull has reached his 10th birthday.

Leanne Daniel, 40, was left devastated after her 31 week scan when doctors revealed that her unborn son, Jamie, had part of his brain growing outside of his skull.

He was diagnosed with a rare condition called encephalocele – a birth defect which causes openings in the skull and for the brain to protrude.

Doctors predicted that Jamie, whose twin, Lucy, was not affected by the condition, wouldn’t survive longer than one hour after birth.

Pic by Pete Goddard/Caters News 

But now, after several operations to reconstruct his skull, Jamie has survived against the odds and has just celebrated his 10th birthday.

Leanne, from Nuneaton, Warwickshire, said: “I’d never heard of his condition until Jamie was diagnosed.

“It was heart-breaking when we were told he had just one hour to live but he has proven doctors wrong ever since.

“I had no idea what to expect when doctors said his brain would be outside of his skull.

“But I was just relieved he was alive and to me he was perfect just like his twin Lucy.

Pic from Caters News 

“They just expected him to die and at first he was just placed in a side room so we could say our goodbyes,

“But when he kept on fighting, they decided to operate and give him a chance.

“After his brain was pushed back into his skull, he needed further cranial facial surgery to correct and realign his facial features.

“Considering the seriousness of his condition he hasn’t been left with severe disabilities as a result.

“He has cerebral palsy and has Botox injections in his arms and legs to help with his movement and development delay.

Pic by Pete Goddard/Caters News 

“But Jamie doesn’t let it hold him back and is constantly laughing, smiling and taking enjoyment from everything he does.”

Jamie has been in and out of hospital since he was born and Leanne thinks he’s nothing short of a miracle to have celebrated his 10th birthday with his twin.

Leanne said: “It’s such a great milestone for Lucy and Jamie to have hit together.

“We still don’t know what the future holds for him but our life has been hospital appointments and facing the unknown for such a long time that we don’t know any different.

“Encephalocele is so rare that we had no idea what to expect but Jamie is doing so well.

“He has defied doctors for 10 years and we know he’ll continue to prove everyone wrong.

Pic from Caters News 

“I hope that one day he’s be able to live independently and at the moment he attends a special school that can tailor to his needs.

“I also live with my mum so she can help with caring for the twins while I work full time.”

Jamie has a scar running down the top part of his face as a result of his cranial surgeries.

Leanne added: “I don’t think Jamie’s aware he’s different from others, he’s not bothered when people stare.

“He’s had a girlfriend called Maddie, who has Downs Syndrome, since he was in reception.

“Everyone who knows him loves him as he has such a lovely personality.”