Toddler with rare deformity has skull 'like crazy paving' after three operations

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A tot born with a head deformity has been saved by surgeons who say her reshaped skull is now like crazy paving.

Little Evie-Mai Coxon is only two years old but already has had three operations.

As a baby she was diagnosed with ­bicoronal craniosynostosis, which prevents the skull and brain from developing normally.

Surgeons have had to take apart her skull and put it back together in a series of ­procedures totalling 24 hours in length.

But the brave tot has shown such courage through it all that her family have adopted the motto “be more Evie” for tough times.

Proud mum Jacky, 31, said: “The surgeons had to reshape her head, and afterwards they described her skull as looking like crazy paving. They had to take three-quarters of it out and put it all out on a table and then put it back together again to reshape her skull.

“When the surgeon came to see me after her final operation he seemed thrilled at how well it had gone. There was this look of pride on his face, which was really reassuring.”

The toddler was diagnosed with bicoronal craniosynostosis

 

Amazingly, Evie was up and about playing peek-a-boo just 24 hours after the last 12-hour operation last September.

Jacky, from Hull, East Yorks, added: “She’s just incredible and a real superstar.

“She has a wound from one ear to another but nothing fazes her. She’s awesome. Every time they operate they use the same wound.

“We were worried that she might get self-conscious about the wound when she’s older, so we got zigzag tattoos on our wrists so we have one too.

“She has no fear, but I was terrified having to hand such a precious piece of me over to some strangers to cut her open.

“But they have saved her life – and now she’s unstoppable.”

Evie was diagnosed after medics noticed something was wrong with the shape of her head after she was born. The skull is made up of several “plates” of bone which, at birth, are usually not tightly joined up and are supposed to gradually fuse together.

But Evie’s condition meant the soft spot on her head and lines that usually fuse together when babies are about a year old had already done so before birth.

Evie’s parents noticed something was wrong with the shape of her head when she was born

 

This prevents the skull and brain growing normally.

Jacky recalled: “A nurse weighing her when she was a baby told us her head was flat at the back because we were letting her sleep too much on it.

“But we knew that was not right because we’d been really careful about how she slept, making sure there was never any ­pressure on her skull.

“When she was finally diagnosed by the paediatricians, I was petrified. I thought we were going to lose her.”

Evie was five months old when she had her first operation, which involved surgeons putting cranial screws into her skull to give her brain room to move. The springs were removed two months later in a second operation.

Her third time in surgery at Leeds Children’s Hospital was her biggest op yet, lasting for a ­gruelling 12 hours.

Her mum said: “After her last surgery she was on the high-dependency unit and her eyes were swollen shut.

“My heart broke, it was so scary seeing her like that. She couldn’t see at all – but hours later she was up and playing.”

Between operations, the plucky toddler has had regular blood and eye checks, as well as tests with behavioural psychologists studying her development.

Jacky, who also has nine-month-old son Jayden, said: “She’s like a Peppa Pig-loving child prodigy, and so advanced for her age.

“She has a wonderful bond with Jayden. After her second surgery [when Jacky was still pregnant with Jayden] she could feel him kicking when I was holding her. It was like he was cuddling her too. Now they are so close.”

She has had to undergo three operations to help correct the shape of her head

Relieved Jacky was also full of praise for the dedicated medical team who she says have saved her daughter’s life.

She said: “During the operations she has had up to five surgeons and each one has played their part in saving her life. Without them her brain would not have been able to grow.

“I want everyone to know how they have saved Evie and how wonderful and absolutely amazing our NHS is.”

Mike Richards, clinical director at Leeds Children’s Hospital, said: “We are very pleased to hear that Evie is doing so well following her procedure at Leeds Children’s Hospital.

“This is a real testament to the skill and expertise of our surgeons, and the great care of our clinical teams, who do such a fantastic job for all their patients. It is my hope that Evie will now go on to live a fulfilling and active life.”

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