A toddler born with a rare defect has made an incredible recovery after surgeons were forced to break open her skull and piece it back together.
Grace Turner-Williams was born with craniosynostosis – a condition which causes the skull plates to fuse together in the womb. It caused Grace’s head to grow long and narrow and could have led to blindness, seizures and brain damage if left untreated. The brave two-year-old underwent an eight hour operation to break and reshape her deformed skull to give her brain room to grow.
It caused severe swelling which left her unable to open her eyes for days after surgery.
Grace, from Llangollen, North-East Wales, has now made a full recovery and proud parents, Rosanna Turner, 23, and Nikki Williams, 24, can’t wait for her to start nursery later this year. ‘Family had commented on the shape of her head but as first time parents we presumed it was normal,’ said Miss Turner. ‘Grace’s operation was the most terrifying time of our lives, but she still came out smiling, she’s such a brave little girl.
‘We were devastated when doctors confirmed she had cranio and would need such complex surgery but we knew it was the right thing to do to give her the best chance in life. ‘Grace’s skull wasn’t expanding the way her brain wanted it too, instead it grew particularly long and narrow. ‘I kept asking myself if we were making the right decision, I was terrified in case something happened to her or if she came out or surgery looking like a completely different baby.’
The teaching assistant said Grace initially looked fine when she came out of theatre. But then her face started to swell – a side effect of the surgery – until she was almost unrecognizable.
‘I just burst into to tears that she had come through and nothing major had gone wrong,’ she said.
‘When her face started to swell she dealt with the situation much better than we did she was very calm and just made sure she had hold of our fingers the whole time knowing we were there.
‘She was soon back to her old self laughing and playing and wanting to be walking around it was so nice when we were able to take her out of the ward and spend family time.’
Unlike other newborn babies who have gaps in their skulls allowing room for the brain to grow, Grace’s skull had fused together. But the condition wasn’t picked up until Grace was eight-months-old when her grandmother, Linda Turner, 56, noticed the soft spot on her head had closed.Miss Turner mentioned it to the health visitor who referred her to hospital for tests. They were initially told it was a bone condition before a second opinion suggested it was craniosynostosis.
WHAT IS CRANIOSYNOSTSIS?
Craniosynostosis is the premature fusion of the skull before birth or shortly after, either in one place or in multiple places. Normally when a child is born the skull is made of individual plates.
If the plates have prematurely fused, the brain will grow but may make the skull shape different.
The child could have brain damage or pressure on the brain if left untreated.
For children with single suture Craniosynostosis, the child usually receives surgery at around a year old.
If the child has a syndrome they will receive treatment at various times up to their teenage years.
Gill Ruff from craniofacial support group Headlines
She was referred to Alder Hey Children’s Hospital where Grace was diagnosed straight away.
“We wanted her to have the operation as there was a possibility that her brain would be crushed by her skull or she could end up with learning difficulties.”
‘Thankfully everything went well and Grace has hit all her milestones, she’s such a happy little girl.’
Miss Turner and Mr Williams, a life guard, said they only noticed Grace had looked different after she recovered.
They started to look through old pictures and wonder how they didn’t notice the condition sooner.
‘Looking back now the shape of Grace’s head was different to our friend’s babies, we just couldn’t see it at the time,’ Miss Turner said.
Family and friends did the Great Manchester Run on Grace’s second birthday to raise awareness of the condition.
They want other parents and health professionals to be able to spot the tell-tale signs.
‘Grace was put through tests which were not needed and we are deeply saddened that this was not picked up sooner.
‘Grace’s operation time could of been halved and far less complicated if she was younger, the whole process would’ve been less stressful and less time consuming.’
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