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Redesigning skulls at Wellington Hospital / The Dominion Post

Redesigning skulls at Wellington Hospital / The Dominion Post

It's 1.03pm on a Thursday when surgeons slice a half-moon from Mitchell Scales' skull.

It is done quickly.

His scalp has been pulled back. A template is rested against his exposed bone, and a crescent shape marked out with, almost unbelievably, a regular pencil.

The saw cuts precisely. The bone is taken off, exposing the thin membrane around 15-month-old Mitchell's young brain.

The toddler is motionless, the modern magic that is anaesthesia doing its trick. Reassuring beeps emit from the heart monitor.

Now for the tricky part.

Hutt Hospital plastic surgeon Charles Davis and neurosurgeon Agadha Wickremesekera must remove Mitchell's entire brow bone and forehead, above his eye sockets.

On a separate table, Davis will take the crescent-shaped bone and mould it into the shape of a new forehead.

Using an ultrasonic welder, he will attach it to the removed brow bone with tiny studs. He will fuse the bones together, curving them into a rounded shape.

The surgeons will then slot the remodelled skull back into Mitchell's head, careful of his eyeballs and brain.

The bone that was Mitchell's old, misshapen forehead will be cut into a new shape and fitted in like a jigsaw, above his newly constructed brow. Then he'll be stitched up.

"It's like Meccano for surgeons," whispers nurse Alison Mackenzie, over the low pulse of the ventilator.

When babies are born, they usually have five separate bones in their skull to allow room for their brain and head to grow.

But one in every 2000 babies is born with one or more of these bones fused together.

It means that as they grow, their skull cannot expand. It is stuck together at the seams, and as the rest of the skull grows rapidly the head and face begin to twist, or bulge out.

In most people, the seams, known as cranial sutures, usually stay open until about 25 years old, to give the brain room to grow.

Mitchell had uni-coronial craniosynostosis, meaning the seams on the front left side of his skull were fused. When surgeons cut away Mitchell's skull, they saw the pressure on his brain was immense.

As soon as they released it, the organ expanded like it was taking a breath.

At 2.29pm, Davis gently fits Mitchell's new skull.

By 2.50pm, he is stitching the muscle next to his eye.

"Dad noticed [an odd head shape] very, very early on, at just a few weeks of age, and wondered if this was the condition and was assured by a few doctors that it wasn't," says Davis, looping stitches through the wavy incision in Mitchell's scalp.

"His brain was really tight under the skull, and it was squashed down by his eye socket. He hadn't shown any developmental problems, which is amazing when you think about it."

The whole left side of Mitchell's forehead, which was sunken in, now looks even. It was brought forward by about 2 centimetres during the procedure.

Mitchell will be left with a mean looking scar, but his skull should be able to grow normally.

"And when he gets his hair wet when he goes swimming with his mates, you won't really be able to see it," Mr Davis says, before reaching for the shampoo.

It's become a joke among the nurses that Davis should run a hair salon, as he always insists on washing his patients' hair before they see Mum and Dad. It's 3.14pm.

It has been a long week for Paul and Leah Scales.

They take turns at sinking into the comfortable couches at Ronald McDonald house, opposite the hospital where Mitchell was discharged about an hour ago, and hugging their son close.

It's been three days since the surgery, and Mitchell is still a little groggy.

There are remnants of bruising around his eyes, and his head is swollen, but he is otherwise doing well.

And the Christchurch family are just happy the ordeal is over. For them, it has been a struggle.

As his parents explain it, young Mitchell was born with a face that was a bit squashed. Of course, to them he was absolutely beautiful and perfect – but there was no escaping that one eye was definitely lower than the other.

A couple of weeks later, they sought a referral to a paediatrician. Mr Scales had done some research, and found that Mitchell's appearance seemed to match descriptions of craniosynostosis.

But the specialist diagnosed deformational plagiocephaly, or flat head, a much more common condition.

"It means basically in utero they get a bit squashed, their face gets a little bit munted, but as they grow it fixes itself," Mrs Scales says.

"Paul said, 'Is there any chance it could be cranio?', and the paediatrician said, 'There's absolutely no way it's that'."

At 3 months old, Mitchell developed a head tilt. The couple went back to the same specialist, who said a muscle in the baby's neck was too tight and sent them physiotherapy. But four months later, physiotherapist Jo Osborne was worried. This should be coming right, she told the Scales.

Off they went to another specialist, this time a paediatric surgeon. He agreed with the first doctor that it was "probably," a common deformation, that would right itself in time.

But by his first birthday, Mitchell was not all right. His head tilted. His forehead bulged. His nose was twisted, and his eye still drooped.

"At this stage I've seen specialists three times, and I'm thinking, 'There's nothing more I can do'," Mrs Scales says.

Around this time, Osborne told the Scales she still wasn't happy, and wanted to refer them to a neurologist.

"I thought OK, if he says there's nothing wrong I'm done, we're just going to let this go.

"Every time you go to see a specialist about your child the emotional rollercoaster you go through is horrific, and I wanted to believe that he'd come right."

Enter just-retired Christchurch Hospital neurologist Martin MacFarlane, who took one look at Mitchell and said: "He's got craniosynostosis."

Ideally, babies with fused bones are operated on in the first few months of their lives. It means the procedure is less invasive, and any potential brain damage is prevented.

Dr MacFarlane told the Scales this, and said their son needed an operation as soon as possible.

But they still didn't like the idea – until they saw a scan that showed just how tightly his brain was packed inside his skull.

"It just put it in perspective for us, because no matter how many times people say this is what he's got, that thought of having your son need surgery ... seeing a picture made it really real," Mrs Scales says.

While they were "apprehensive", Davis and his team had made them feel as comfortable as possible when it's your child going under the knife, Mr Scales says.

"For them cutting off someone's skull and doing the remodelling is nothing out of the ordinary, but for us laypeople who don't know anything about it, it is still major surgery."

At Hutt Hospital, Davis is turning plastic skulls over in his hands. He points here and there, explaining where a seam is fused and where extra pressure might have built up on the brain.

It's a routine he goes through with between 30 to 40 sets of parents a year, who are referred to the craniofacial team at the Wellington Regional Plastic Surgery Unit for surgery to fix their child's craniosynostosis.

A similar number are seen by the team at Auckland's Starship children's hospital.

Davis knows how agonising the experience can be for parents.

"Parents know that there is something wrong with the skull, and no parent will want their child to undergo surgery for just purely cosmetic reasons.

"Most parents know that there is no option, they have to undergo this surgery, there is no shortcut, there is no easy way around it, but they still don't want to."

He pauses, turning the skull over contemplatively.

"I guess when you sit back and think about it we are really just operating on a thin piece of bone overlying the brain, and we're doing something that allows the brain to grow and develop normally.

"When we think about all the risks and complications that can occur with this surgery, I always prefer that to what are the risks and complications if you don't do anything.

"I think with all of us as surgeons, we wouldn't do these procedures unless we would do them for our own children."

And if left untreated, the consequences can be serious, he says.

"Some [children] will have subtle speech and language delays, and some will have much more significant issues. We even see cases of blindness, at the extreme.

"We are operating to improve the functional potential of the brain, but there are also aesthetic cosmetic benefits for the surgery, and it's nice for children to be able to not worry about how they wear their hair and not have to worry about teasing in the playground.

"It makes a tremendous difference for self-esteem and confidence."

A skull fusion would normally be noticed at birth – particularly if the head was unusually elongated and narrow – and sometimes even on the prenatal scan at 20 weeks. There is no known cause.

Sometimes, it is not picked up till much later.

"We've had a few children who haven't been detected until 5, 6, or even up to 10 years of age, who once they've grown hair nobody would usually notice ... but they've had a dropping off at school, or been getting headaches."

And early detection is critical. Before babies are 9 months, the surgical procedure is much less dramatic, and doesn't involve an entire remodelling of the skull like Mitchell's.

"The earlier you do something to take the pressure off the brain, the more likely it is that you can rescue brain function that would otherwise be lost.

"The younger you are, the easier your bone heals and the more you can bend and shape the skull without fracturing it. In a young infant you can take the bone out and bend it and shape it and it's a bit like very firm, stiff cardboard versus brittle eggshells."

And example of a child with an early diagnosis comes in the form of the gurgling bundle of joy that is Anthea Jameson.

On the same day as Mitchell's surgery, Davis also operates on the young Wellingtonian.

The 3-month-old has the same condition as Mitchell, only different bones are fused together. In Anthea's case, the sagittal seam in the middle running from the front to back was stuck tight.

Her parents, Robyn Lantsbery and John Jameson, had noticed it straight away. Her head was awfully long and narrow, even on the prenatal scan.

At her birth, doctors told them it was due to "positional moulding," while in the womb, and would fix itself over the next six months.

"They were sort of quite blase about it, so we weren't too worried ourselves at that point," Jameson says.

But after a couple of months, they knew something was really wrong. A ridge had developed along the top of Anthea's head, which had not happened with their previous two children.

They begged a midwife for a referral to a paediatrician, fully expecting "to walk in and be told that we were panicking, nothing that a good head of hair wouldn't fix and don't worry", Lantsbery says.

To their surprise, the pediatrician said they had a right to be concerned, and referred them to Mr Davis for surgery.

"They don't touch the brain but, of course, they are working so close to the brain so yes, it was quite big news, wasn't it, sweetheart?" says Lantsbery, widening her eyes at Anthea, who is happily babbling away on mum's knee at their Petone home. "It was certainly quite sobering."

Because she was diagnosed so early, Anthea's surgery was much simpler. Davis made a wavy incision in her scalp, cut the bones at the top of her skull apart, drilled four holes, and inserted a pair of stainless steel springs.

If the two pieces of bone were simply separated, they would heal very quickly – much like a fracture.

Up until a few years ago, doctors were holding the bones apart with screws. Davis was the first in the southern hemisphere to use a spring system, which he learnt from a pioneering doctor in Sweden.

The springs are inserted in the seam, and the head stitched back up. They slowly push the bones apart, so the skull assumes a wider, normal shape and allows room for the growing brain.

In three months, Davis will operate again to remove the springs.

Anthea's surgery is straightforward, and all over within 45 minutes.

Less than a week later, she's all smiles. A train track of stitches runs higgledy-piggledy down her little head, and there's bruising visible underneath.

But her head shape already looks better, and her parents are relieved.

For them, there was no choice about whether to go ahead with the procedure.

"You never know when a child is born what difficulties they might face, and what cognitive abilities they might have ... but we have given her the best possible chance of fulfilling whatever potential she's got," Ms Lantsbery says.

"If we'd left it and then we found [she] had severe or mild difficulties, I certainly wouldn't want to trade the lifetime of guilt for the inconvenience of some surgery. We're very lucky we got her in when we did, because if we had waited we would have been facing a much more invasive procedure."

They say mothers are always right.

It's safe to say that fathers also know a thing or two.

Mitchell and Anthea's parents, who got to meet each other while their children were in hospital, have learnt to always go with your gut.

"It was just that sense that something wasn't right, and I think we're lucky being third-time parents that we had that confidence, being through it before, that something wasn't right," Ms Lantsbery says.

"There's no harm in being told there's no concern, but certainly if there is, it does allow you to get on to fixing the problem a lot faster."

And the Scales also urge parents to get a second opinion, especially if they know there is something wrong with their child.

It's a week since the surgery, and the family is back in Christchurch. Mitchell is happy to be home, and already looks like a normal little boy. Unless you look closely, you can't tell there was ever anything wrong.

"As parents we were sort of concerned enough to realise that there's something not quite right. You put your faith in health professionals ... but obviously your kid is your most important thing in your life and doctors are only doctors, they're not gods or anything," Mr Scales says.

"Parents do know best, they know their child the best out of anyone. You get the opinion, and if you're still not happy, get a second one."

- Fairfax Media

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