Hartlepool baby battling back from two operations on rare skull condition

LITTLE FIGHTER: Dylan after his second operation.
LITTLE FIGHTER: Dylan after his second operation.

BATTLING baby Dylan Davis has undergone two operations to relieve the pressure on his brain after being born with a rare skull condition.

The 20-month-old youngster suffers with craniosynostosis – which causes sections of the skull to be fused together preventing it from expanding and leading to pressure on the sufferer’s growing brain.

Dylan Davis.

Dylan Davis.

His mum is involved in a campaign to help parents of other children with the condition and to raise awareness of it.

The tot was born at the University Hospital of North Tees in Stockton in May 2013, weighing a healthy 7lb 7oz, after his mum Diane Hender’s normal pregnancy.

But the illness was picked up almost immediately by a midwife, who noticed Dylan had an abnormal shape to his head.

The tot was given x-rays and scans and eventually, at two weeks old, he was diagnosed with craniosynostosis – which affects just one in every 3,000 babies.

He had two fused bones in his head and doctors transferred Dylan to specialists at the Alder Hey Children’s Hospital, in Liverpool, where he underwent a six-hour operation at just five months old to remove part of his skull to release pressure on his brain.

It was during this surgery that it was discovered that Dylan was also blind in his right eye.

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Little Dylan’s last operation was just two weeks ago when he was in the operating theatre for a mammoth 10 hours so surgeons could remove the front part of the skull, to re-model the shape of his head, said his mum.

Single mum Diane, who is also mum to Rhodri Davies, 10, Leuan Davis, 2, and Lilja Davis, 11 weeks, said: “It was a shock and was worrying when they thought something was wrong with him, but I was relieved that it was something that could be fixed.

“The operations were very nerve-wracking and they just seemed to take forever.

“After the last operation the surgeon said it was the worst case he had seen, but Dylan looks like a different child now.

“He’s still got the same old cheeky personality though.”

The 37-year-old, from the Clavering area of Hartlepool, added: “Dylan has taken it all in his stride really. He was frustrated when his eyes swelled shut after the second operation, but once that subsided he was fine and he was just wanting to play. He bounced back really quickly.”

Dylan could be faced with further surgery as he grows, but for the moment the illness has been stabilised.

Diane, a former document controller for JDR Cables, said Dylan is also fortunate that he does not seem to have been left with any learning difficulties, which craniosynostosis can often cause.

She said: “His talking is great and he gets about by being a bum shuffler, as some babies do.

“He’ll have regular speech and language assessments to see if he will need any extra help at school, but in my opinion I would say that was unlikely by the way he is progressing.

“I’m so relieved about that because there are some children with this illness that are a lot worse off.”

Diane added: “Dylan’s two-year-old brother doesn’t give him any special treatment either and still gives him the odd push and shove!

“Saying that, when Leuan saw him after he’d had the surgery just a couple of weeks ago, he said ‘poor Dylan’, so he must know that something is wrong.”

WHAT IS CRANIOSYNOSTOSIS?

CRANIOSYNOSTOSIS is a rare skull condition affecting just one in every 3,000 newborn babies.

The illness causes a baby to be born with, or develop, an abnormally shaped head due to premature fusion of the skull bones.

The skull normally has around six ‘seams’ that can move and flex as the child’s brain grows.

But this illness causes the seams to be fixed together, meaning the brain continues to grow but the skull does not.

This can create increased pressure within the skull, called intracranial pressure, and could lead to brain damage, learning difficulties and eye problems, in some cases.

When one area of the skull is prevented from growing, other areas may “overgrow” to compensate and limit the pressure developing around the brain.

A lack of growth in some areas and compensatory growth in other areas results in an altered head shape.

Craniosynostosis can affect both sexes but is more common in boys.