Baby with rare condition had skull removed and 'put…

Baby with rare condition had skull removed and 'put back together like a jigsaw'

A baby born with a rare condition had to have her skull removed and 'put back together like a jigsaw puzzle'.

Baby Violet was born with one of her ears at the front of her face, and the other at the back of her head, the Liverpool Echo reports. Her mum Jessica Owens, 32, knew something was wrong so spoke to several doctors.

Despite Violet's head looking like it was 'pushed to one side', five paediatric doctors told Jessica that there was nothing wrong with her daughter. But she persisted and Violet was sent for a scan.

At eight-weeks-old, she was referred to Alder Hey Children's Hospital where they diagnosed Violet with Craniosynostosis, a very rare condition where the bones in a baby’s skull join together too early. Jessica said: "It's like I had this mother's instinct, I knew something was wrong and I felt like nobody was listening to me.

"When I went into Alder Hey I sat next to this consultant and told her that I though Violet had Craniosynostosis, she said to me 'do you know how rare this is?' and I said 'yes, that's why I need somebody to help me'.

"I can't remember if they did a CT or MRI scan, but after that I got the call to say she had Craniosynostosis and that she would need surgery. I was in bits."

At 16-weeks-old Violet underwent a cranial vault reconstruction at Alder Hey Children's Hospital. She then had to wait for her brain to naturally turn itself before having a second surgery at 18-months-old, which would last 12 hours.

Violet was referred to the Alder Hey Children's Hospital (Liverpool Echo)

Jessica said: "I can't remember much [of Violet's time in hospital] because it was that traumatising. I was worried she wouldn't come out of it. I will always remember them [doctors at Alder Hey] telling me that once the brain is operated on there's a layer of fluid that covers it, and they said they needed get the skull off without ripping the top of the fluid otherwise she could have a stroke, be severely disabled or die.

"In the surgery they had to remove the skull, put it on a separate table and put it back together like a jigsaw puzzle. The back of her skull is now at the front, and the front of her skull is at the back of her head.

Jessica with her two daughter's Violet and Rue (Liverpool Echo)

"She came through with no complications. Everyone at Alder Hey was fantastic, I couldn't fault the treatment and care they gave my daughter."

Now, Violet is four-years-old and has just started school. She enjoys gymnastics and playing football and has 'no fear'. She has to go back to Alder Hey for scans every 18 months and sees a number of specialist doctors for her eyes, teeth, jaw, brain and speech.

As a thank you to Alder Hey, Jessica sets up and decorates the neurosurgical ward's Christmas tree every year. She said: "I always will [set up and decorate the Alder Hey tree]. You can't repay a hospital for saving your child."

For more information on how to help Alder Hey visit www.alderheycharity.org for more information.

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