Baby had part of skull removed after rare condition left it dangerously deformed


A 16-week-old baby had parts of his skull removed after a rare condition caused it to deform dangerously.

George Johnson underwent surgery to remove two pieces of his cranium when craniosynostosis caused his skull to grow abnormally.

If untreated, the congenital defect can affect the brain’s development leading to serious complications, including pressure on the brain, visual defects, delay in development and seizures.

George, from Yarm, North Yorkshire, was born in August 2020 with two different types of craniosynostosis. This caused his cranial bones (the bones which cover the brain) to fuse together too soon before George’s brain could develop sufficiently.

His mum Beverley Fothers became concerned when she noticed an unusual ridge of the back of George’s head when he was five weeks old.

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George Johnson and his mum Beverley Fothers
George Johnson and his mum Beverley Fothers

Beverley told TeessideLive: « I thought there’s something seriously wrong.

« I googled it and petrified myself with the condition as the only treatment is surgery.

« I cried for about three days and I didn’t say anything to my partner.

« When you have a baby you want everything to be perfect.

Beverley found a support group and was advised to seek the advice of a specialist nurse at Alder Hey children’s hospital in Liverpool.

She said that the nurse confirmed George had Sagittal craniosynostosis at the back of his head and advised her to get a referral to the hospital from her GP.

In December last year, when George was four months old, he underwent an operation on the part of his skull which had come together too early.



George Johnson and his dad Steven Johnson
George Johnson and his dad Steven Johnson

While in surgery, medics discovered that bones at the front and side of his head had also fused together, known as coronal craniosynostosis.

They also opened up that part of his skull during the six-hour operation at the hospital on Merseyside.

Following the surgery, George was left with a zig-zag scar from ear to ear, across the top of his head.

Beverley said that the affected parts of his head felt like a « sponge » as they were soft with no bone.

Beverley, who is also mum to Joshua, 13, and Zac, nine, said: « People don’t know about this condition. There’s not a lot of research about it.

« It’s hard to pick up early on. »

The mum-of-three, who is a nurse at James Cook University Hospital in Middlesbrough, said: « We managed to get him an operation at 16 weeks.



George Johnson now, months after his operation
George Johnson now, months after his operation

« George had bits of his skull taken out so it could regrow again.

« That was the first time me and George had been separated since he had been born.

« They can have a stroke while having it or a bleed on the brain.

« It was really difficult, awful. »

Six months on from his operation, Beverley and George’s dad Steven Johnson, 26, a physiotherapist, are thrilled with how well he is doing.

George, who is now nine months old, will be required to return to the hospital in Liverpool for regular appointments to monitor his development and vision.

Beverley said: « He’s so funny, he’s always smiling, he’s really happy and into everything.

« He’s just doing so well. »

As a way of thanking the hospital, Beverley, Steven and Joshua will attempt to climb the Yorkshire Three Peaks in 12 hours to raise money for the craniofacial department.

So far, they have raised almost £300 of their £1000 target via their online fundraising page.

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Beverley said: « We want to give back to the people who have looked after us. »

She has urged anybody who thinks their babies head shape is abnormal to push for further specialist advice.