Surgeons take 18-month-old’s skull apart and reassemble it

A toddler underwent a potentially life-saving surgery at just 18 months old to dismantle and piece his skull back together – like a ‘jigsaw’.

Riley Maddox developed craniosynostosis months after being born, which is a rare condition that causes the plates of the skull to fuse together.

The irregular skull shape can crush parts of the brain, which may lead to learning difficulties, eye problems and ultimately death.

Experts do not know what causes the condition – which affects an estimated one in every 1,800 to 3,000 children – but believe it may be genetic.

Riley, now five, has a zig-zag scar to remind him of the condition that has caused delays in his development, which may prove permanent.

Riley Maddox had a life-saving five-hour surgery at just 18-months-old to dismantle and piece his skull back together – like a ‘jigsaw’

The boy, from Doncaster, developed craniosynostosis months after being born. The irregular skull shape can crush parts of the brain which may lead to learning difficulties, eye problems and ultimately death

His stay-at-home mother, Amanda, 39, said Riley (pictured together), now five years old, has a speech impediment, struggles with balancing on one leg and cannot yet ride a bike

Riley underwent an intricate, painstaking five-hour operation which saw surgeons cut his skull from ear to ear. 

The youngster was unable to open his eyes which were completely ‘swollen’ shut and spent days in a high dependency unit.

He now has a speech impediment, struggles with balancing on one leg and cannot yet ride a bike – despite being five years old.

However, the determined schoolboy remains in high spirits and is enjoying life back at home in Doncaster, South Yorkshire.

His stay-at-home mother, Amanda, 39, said: ‘Riley will be six in June but he is very much behind what you would expect of a child his age.

‘You’re signing a consent form to send such a tiny, little person down for such as big, daunting operation.

‘It’s such a mix of emotions. I felt awful because I’m his mum and my job is to protect him.’

A zig-zag scar acts as a permanent reminder of the surgical procedure and Riley’s condition has caused delays in his development, which may prove permanent

Prior to the surgery, craniosynostosis affected Riley’s life on a daily basis, restricting his brain’s normal development

WHAT IS CRANIOSYNOSTOSIS?

Craniosynostosis is a rare skull problem that causes a baby to be born with, or develop, an abnormally shaped head.

It is rare, affecting an estimated one in every 1,800 to 3,000 children. Three out of every four cases affect boys.

The irregular skull shape in craniosynostosis can cause persistent headaches, learning difficulties, eye problems and other symptoms.

Craniosynostosis is the result of the premature fusion of different sections of the skull. 

This means the skull is unable to grow in affected areas.

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

She continued: ‘If he hadn’t had the operation his misshaped skull would have got worse as he got older. The pressure on his brain could have potentially killed him, he had to have it.

‘Riley’s soft spot was almost completely closed by six months. The plates in the skull are not meant to fuse until a child is four years old.

‘When I look at baby photos from about two months old you can see Riley has a high forehead, it was more noticeable at three months.’

Amanda’s pregnancy went relatively smooth and other than being delivered by emergency c-section two weeks after the due date, Riley was a healthy, 8lbs baby.

But the trained nursery nurse said ‘alarm bells started ringing’ when she realised her toddler wasn’t reaching some of his key milestones, such as standing, talking or crawling up the stairs.

Later, a paediatrician said to Amanda, ‘have you noticed his head shape?’. 

A CT scan at 13-months-old later confirmed he was suffering from craniosynostosis.

Riley went under the knife at Birmingham Children’s Hospital – one of four so-called ‘super centres’ in the UK.

Amanda’s pregnancy went related smoothly and other than being delivered by emergency c-section two weeks after the due date, Riley was a healthy, 8lbs baby

But the trained nursery nurse said ‘alarm bells started ringing’ when she realised her toddler wasn’t reaching some of his key milestones, such as standing, talking or crawling up the stairs. Pictured: Baby scan of Riley Maddox

Later, a paediatrician said to Amanda, ‘have you noticed his head shape?’ A CT scan at 13-months-old later confirmed he was suffering from craniosynostosis

Amanda said: ‘You’re signing a consent form to send such a tiny, little person down for such as big, daunting operation. I felt awful because I’m his mum and my job is to protect him.’ Pictured: Riley with his father Andy Maddox

Describing her son’s diagnosis, Amanda said: ‘When he was first diagnosed it was like being punched in the stomach.

‘The day after the op, he was on the high dependency unit on morphine. For the second day they took the pressure bandage off and that’s when his face swelled up.

‘Both of his eyes were swollen which was scary for him because you can’t explain to someone that young was is happening.

‘Once the swelling goes down it’s surprising how quickly they spring back.

‘When I first saw Riley after the surgery it was a relief to know that he was ok.

‘But, you then quickly realise your baby has a cannula inserted into both hands and both feet, four different tubes in his neck and a drain from his skull which is full of blood and it hits home.

‘When he finally came round, I remember the nurse asking me if I wanted to hold him but I was so nervous I was going to catch a wire.’

Experts do not know what causes the condition – which affects an estimated one in every 1,800 to 3,000 children – but believe it may be genetic

Riley went under the knife at Birmingham Children’s Hospital – one of four so-called ‘super centres’ in the UK

Riley underwent an intricate, painstaking five-hour operation which saw surgeons cut his skull from ear to ear

Prior to the surgery, craniosynostosis affected Riley’s life on a daily basis, restricting his brain’s normal development.

‘He didn’t walk independently until he was two years old,’ added Amanda.

‘He could not get up the stairs independently, he could not stand by himself either and he was two years old before he started saying single words.

‘He’s got what doctors call global developmental delay which means there is a delay in two or more areas.

‘It’s a knock-on effect because certain areas of the brain that are linked to development were not able to grow at the rate they should have done.’ 

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