Real life Humpty Dumpty: Little boys skull taken apart and pieced back together due to rare skull condition
An adorable little boy has been dubbed the real life Humpty Dumpty by his parents – after life-saving surgeons cracked open his skull and pieced it back together again.
Nixon Lewis, 3, from St Neotts, Cambridgeshire, underwent complex reconstructive surgery to fix his long, narrow skull that kept growing due to a rare but deadly condition.
He was diagnosed with Saggital Craniosynostosis at the age of two – where the skull prematurely fuses causing pressure on the brain, which if left untreated can cause brain damage, blindness, learning difficulties, hearing problems as well as severe vomiting and headaches.
It was first noticed that Nixon’s head was growing faster than the rest of his body at six months old, but last year it worsened.
His worried parents Ilona and Paul Lewis, 33 and 36, even noticed that his distorted head was so misshapen that he even had to wear adult-sized hats and cycling helmets.
Two months ago surgeons had to break his skull before reshaping it and now the swelling has gone, he has made a fully recovery.
Ilona, a full time mum-of-three, said: “It’s shocking what little Nixon went through, he’s like a little Humpty Dumpty having to be pieced back together again after having his skull reshaped.
“Surgeons had to cut open his head, peel back the skin, break his skull open, take out a half an inch of bone, place it on either side of his head and then reshape it.
“It’s an awful lot to go through at such a young age but Nixon has been so brilliant and is a real trooper.
“We were first told his head was growing at an increased rate during a fortnightly monitoring for a clinic trial.
“While the rest of his body was growing at a normal rate, his head was getting longer and narrower due to premature fusion of the sagittal sulture.
“Without the measurements we wouldn’t have noticed there was anything wrong, I guess we were blind to it before.
“After being referred to a specialist he was diagnosed with Craniosynostosis and doctors kept monitoring his head as we knew at some point he would need surgery.
“When we went back last year, his head shape had changed very dramatically, it was longer and narrower that it should have been, limiting the space his brain needs to grow
“We had to get him adult cycle helmets and adult baseball caps because kids ones didn’t fit him.
“Now nine weeks on, he’s back to normal now, but even throughout it all he’s always had the same character, even after surgery he wanted ice-cream for breakfast.
“Once we got him back we just stared at him for ages, we couldn’t believe it was all over, we’d all survived it and he’d soon be ready to come home.
“Part of his skull is now held together with screws that can be seen under his skin, but Nixon doesn’t seem phased at all by it all, which is pretty remarkable.”
In June last year, results from a CT scan confirmed Nixon had craniosynostosis – which affects one in 2,500 children.
Four months later an Intracranial Pressure Monitor confirmed that due to the restricted growth of his skull, pressure was being put on his brain and surgery was scheduled.
Ilona said: “In October during Nixon’s cranio-surgeon walked in and his face dropped, he wasn’t happy and could tell just by looking at him that our son needed surgery on his head.
“After his operation his head swelled massively, we saw it unfold gradually the day after his one eye closed, then the next day he couldn’t see at all – my heart sank watching him.
“Over the next couple of days he looked like an alien, the swelling to his head was like a fluid that would move from one side of his head to the other and also he had large, big bruised eyes.”
Recently he’s just recovered from the surgery and doctors are optimistic he will not need any more surgery.
Craniosynostosis is caused when one or more of the plates of bone in the skull fuse too early, the bones then grow rapidly in another area of the skull to compensate – causing an unusual head-shape.
Laura Sutton, chair of Headlines Craniofacial Support, said: “Each case of craniosynostosis is different, there are a number of sutures that can fuse, sometimes more than one, to differing degrees and at different stages of growth and there may be genetic conditions involved.
“Each case is dealt with on a case by case basis with differing dates for surgery depending on the case and on the specialist treating them.”
For more information visit www.headlines.org.uk or call the helpline 01454850557
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