{"id":7509,"date":"2019-07-17T14:13:24","date_gmt":"2019-07-17T04:13:24","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=7509"},"modified":"2019-07-17T14:16:58","modified_gmt":"2019-07-17T04:16:58","slug":"surgeons-remodel-skulls-of-boys-born-with-rare-disorder","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/surgeons-remodel-skulls-of-boys-born-with-rare-disorder\/","title":{"rendered":"Surgeons remodel skulls of boys born with rare disorder"},"content":{"rendered":"
\n

As soon as Sarah Hocking saw her third son born, she knew his first year of life was going to take a slight deviation.<\/p>\n<\/div>\n

But she and partner Selwyn Clapp had been there before, and they could do this again.<\/p>\n

\"\"
Picture: Jay Town<\/figcaption><\/figure>\n

The genetic syndrome that saw the mother-of-three needing an invasive schedule of surgery up until her teenage years to correct the shape of her skull was passed on to her twins, Benjamin and Spencer.<\/p>\n

And now, almost two years on, their third son Chester looked just like his mum when he emerged kicking and screaming into the world.<\/p>\n

\u201cIt\u2019s meant to be a 50-50 chance of passing it on, but at the moment it\u2019s feeling a lot more like 100-100,\u201d Ms Hocking said.<\/p>\n

\u201cBut whether we find out when I\u2019m pregnant or after they\u2019re born, it wouldn\u2019t change anything.<\/p>\n

\u201cYou wouldn\u2019t have thought it was possible to love someone so much.<\/p>\n

\u201cWe had the twins and adore them. Would we have enough love for another baby?<\/p>\n

\u201cThe moment Chester was born he was perfect and I feel in love all over again.\u201d<\/p>\n

Craniofacial surgery is vital to stop the growing brain from being compressed in a skull that is too small. Without treatment, it can be fatal.<\/p>\n

But surgical techniques have advanced dramatically, so her boys look likely to need just one operation as babies.<\/p>\n

\u201cIt\u2019s hard every time they come back and say they do have it, because I\u2019m the carrier,\u201d Ms Hocking said.<\/p>\n

\u201cIt\u2019s difficult knowing you\u2019re passing this gene on to your kids. But we wouldn\u2019t change a thing because it\u2019s fixable. It\u2019s all cosmetic. It doesn\u2019t impair their learning, their development or growth.\u201d<\/p>\n

In March last year, in a specially organised back-to-back full day of surgery, the couple handed their eight-month-old twins to plastic surgeon Jonathan Burge and neurosurgeon Alison Wray for the corrective operation.<\/p>\n

\"\"
Picture: Jake Nowakowski<\/figcaption><\/figure>\n

The posterior distraction surgery is typically performed on babies, before the sutures have fused on the skull and while the bones are still soft.<\/p>\n

The Royal Children\u2019s Hospital has recently started using the technique \u2014 increasing the size of the skull by lengthening the head from the back \u2014 in children up to eight years of age<\/p>\n

\u201cIt\u2019s our get-out-of-jail card for making the space bigger for that rapidly growing brain,\u201d Mr Burge said.<\/p>\n

\u201cIt gives us time, which you urgently need in those first few years of life.\u201d<\/p>\n

In the operation on June 26, once Ms Wray cut the skull from across the top of the head from ear to ear, Mr Burge attached distractors to the skull with plates and screws.<\/p>\n

The arms of the distractors stick out from Chester\u2019s temples like antennas.<\/p>\n

Each day the couple turns the distractors twice to open the gap by .3mm. These turns mimic the kind of pulsing the skull bones need to grow and strengthen.<\/p>\n

Just as surgeons did for the twins, they saved a bag of hair clippings from Chester\u2019s first haircut \u2014 the shaved runway across the top of the head where the surgeon\u2019s scalpel would make its incision.<\/p>\n

Two days after surgery, Chester was discharged. His trademark smile and poked-out tongue were back.<\/p>\n

The twins were back to running down to Chester\u2019s bedroom, yelling his name and smothering him in kisses.<\/p>\n

\u201cChester will be the one who gets the twins in trouble,\u201d Ms Hocking said.<\/p>\n

Words Brigid O’Connell, Herald Sun.\u00a0 Photos Jay Town & Jake Nowakowski, Herald Sun.<\/em><\/p>\n

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