Every year, more than a thousand children with facial abnormalities are treated at the Oxford Children’s Hospital’s pioneering craniofacial unit. The work carried out by the world-class team is quite simply life-changing.
“When you’ve got an odd-shaped head, children are probably more ruthless and cruel,” says Tom Bowran, whose baby daughter Lucy is being treated at the unit at John Radcliffe Hospital.
“The name-calling, the possibility you’ll miss out on something, the bullying even to a late age… that was something I was so keen that Lucy avoided. I wanted her to have as good a quality of life as any parent would.”
Tom is watching Lucy go through a similar experience to the one he had as a child.
Lucy was seven weeks old when Tom and his wife Hanna, who are from Cambridge, were told she had sagittal synostosis.
The top plates on her skull had fused, stopping it from growing properly, and she had to be referred to the specialist department.
“I was absolutely terrified,” Hanna says. “The fact that her dad had something similar and that was his worst fear, that Lucy would end up with anything like that.
“The hospital squeezed us in straight away and they’ve been absolutely brilliant… they’ve been holding her hands every step of the way.”
David Johnson is head of the unit and a consultant plastic surgeon.
His department sees about 1,200 patients each year and carries out up to 100 complex procedures in that time, making it one of the busiest units of its kind in the world.
“Lucy’s skull has not been able to grow very well from side to side, and has been forced to grow in a long and narrow fashion,” he explains.
“The operation was to shorten her skull by taking the bone off the front and the bone off the back… reshaping that bone and fixing it back in position again.”
Hanna says knowing the surgery had gone to plan “was the best feeling in the world”.
As a result Lucy lost the “big forehead… the funny shape at the back, and she looks completely different”.
“More importantly it’s given her brain the room to grow that it needs.”
“Yesterday was possibly the longest seven hours of my life waiting for her to come through the operation,” Tom says.
“Just knowing what she was going through and the potential risks that had been spelt out.
“It was a big relief seeing the reassuring faces and Mr Johnson with his smiley face telling us he was delighted with the progress.”
More than 25 people work on Mr Johnson’s team and they are used to solving challenging cases, some affecting only one child in tens of thousands.
Their expertise is valued by the Department of Health, and the unit receives specific funding because of its designation as of one of the NHS’s “highly specialised services”.
Anthony Carter, father of two-year-old Brianne, remembers when his family first met the elite team.
“There were 10 people including Mr Johnson in there and it was so scary,” says Mr Carter, who is from Wiltshire.
“It then hit us how serious it was. Then we went through each individual person, and they each explained, and we were a bit more at ease.”
“We have to look at doing unique and novel things for individuals,” Mr Johnson explains.
“There are many examples where I’ve been doing things for the very first time, and a lot of conditions where we’re having to think on our feet and almost design new operations from scratch.
“That in a way is one of the most challenging things of my job, but also one of the most rewarding.”
Brianne has an extremely rare condition called cranio-fronto-nasal dysplasia. She was born with a flatness on one side of her forehead, a cleft lip and palate, and a complex craniofacial cleft, leaving her with a gap in the bones forming in her face. She’s the only child in the UK with this set of issues.
“All the scans are quite strange to see… the work and detail that has gone into piecing the jigsaw puzzle of her head,” Anthony says.
Mr Johnson describes the complex eight-hour procedure as akin to “robbing Peter to pay Paul”.
“I created a new forehead based on a piece of bone on the top of her skull, and her old forehead has been cut up into little pieces and placed back where the new forehead’s come from.”
It has bought Brianne time, but she will still require a serious procedure when she is about 10 years old, to move her eye sockets closer together.
Unfortunately, the day after Brianne returned home she fell off a sofa on to her head. She had a seizure, and had to be flown to hospital by air ambulance.
It is a reminder why so many families that use the unit – and who often stay there for extended periods – take things one day at a time.
But Stephanie says her daughter, who has since recovered from her fall, loves visiting the unit, which takes pride in its welcoming atmosphere.
“She gets so excited when we pull in, it’s like we’re taking her to a theme park.”