A toddler has had his skull broken and fitted with springs, after he was born with a rare genetic condition that sted his head from growing.opp Coban Sykes was born without a soft spot in his skull, which means it is unable to expand to accommodate his growing brain. The condition, known as Muenke’s Syndrome, affects just one in 30,000 children. The brave 19-month-old underwent a four-hour operation at Great Ormond Street Hospital last week to ease the pressure.
It has left him with 85 stitches and a delicately attached section of skull, which doctors warned might move leaving his head flat or parts of his brain exposed.
Meanwhile his family have padded every room in their house to stop him from hurting himself.
Coban faces more operations as he grows and without treatment he would go blind and deaf. He will have further springs added between a membrane on the outside of his brain and skull in April. The surgery is known as posterior skull vault expansion using springs.
His mother Nicola, from Wombwell, South Yorkshire, said caring for her son was a 24-hour job because the slightest bump to his head can worsen his condition.
She said: ‘He has had this disability from birth and we were hoping he wouldn’t need an operation for a while but his eye sight started deteriorating in September and the doctors at Great Ormond Street said it was important he have the operation then.
‘When he was first born the soft spot at the top of his head was fused, which meant his head couldn’t accommodate his growing brain. That led to him having an abnormal shaped skull because his brain was pushing to grow.
‘They’ve opened his skull and put metal springs at the back to give him a bit of room and in six months they will need to break it at the front to do the same again as he keeps growing.’
His family, including sisters Rianna, six and Evie, four, are now having to adjust to to their new routine at home.
Nicola said: ‘The problem is, he can’t have a helmet on as his skull is moving around after the operation and a helmet would make it misshappen and cause him problems.
‘So it meant that we’ve got to somehow find padding for everything in the house, walls, cot, bed, everything really because the slightest knock can be very serious for him.
‘It’s very dangerous for him now, basically his head his like a sponge and because he’s toddling we’re having to follow him constantly to make sure he doesn’t walk in to something.
‘We’ve had a difficult time of it. It hasn’t been easy. It’s all come at once to be honest and having to travel to London isn’t easy – especially because he’s got two older sisters at school.
‘Coban needs 24-hour care, and because of what he’s been through with the operations he’s very clingy. We just need a bit of help really.’
The family are organising fundraisers to help them pay for Coban’s care. For more information and to donate visit http://cobansykes.vpweb.co.uk/