Brain op Harvey’s remarkable spirit

Six year old Harvey Brown of Pilling was born with rare condition - craniosynostosis - his skull was fused together at birth restricting brain growth resulting in major surgery for his skull to be re-modelled and fit back in. He has recently had to undergo the same procedure again the first case of its kind at Alder Hey. ' Harvey is pictured with his mother, Gill.
Six year old Harvey Brown of Pilling was born with rare condition - craniosynostosis - his skull was fused together at birth restricting brain growth resulting in major surgery for his skull to be re-modelled and fit back in. He has recently had to undergo the same procedure again the first case of its kind at Alder Hey. ' Harvey is pictured with his mother, Gill.

A COURAGEOUS little boy from Pilling is recovering at home after surgeons cut away pieces of his skull and put it back together for the SECOND time.

Six-year-old Harvey Brown, of Horse Park Lane, suffers with a rare condition that left his skull fused together – restricting the growth of his brain leaving him at risk of permanent brain damage, blindness and deafness.

He underwent his first major operation in 2008 aged just two-and-a-half.

But last month Harvey, who has even suffered name-calling as a result of his condition, had to undergo 10 further hours of life-saving surgery.

Using a new state-of-the-art scanner that guides them away from major blood vessels, surgeons from Alder Hey Children’s Hospital in Liverpool cut open his skull from ear to ear and removed the back part of the skull to be re-modelled and replaced.

Harvey’s mum Gill, 41, said: “Harvey has been so brave, he is a real character, has never ever moaned about all the trips to Alder Hey, the MRI and CT scans - he just gets on with it.

“He is a real inspiration to all who meet him, a real happy chappy. He has been through so much, bad headaches, name calling, but he never complains.

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“It is quite hard to explain the feelings when we found out we’d have to go through it again.

“It was such a risky operation but when the scans come back and you’re told your child is at risk of suffering brain damage you don’t really have a choice.

“But Harvey from day one has just taken it in his stride.”

Harvey was born suffering from Craniosynostosis, a rare birth defect that effects around four in 10,000 babies, in which the plates of the skull fuse together early restricting the brain’s growth.

The disruption of the brain’s growth left Harvey with an abnormally shaped skull, crushing his brain as it grew.

Despite a slight stammer, Harvey’s parents Jim and Gill were unaware of his condition until he was two, when Harvey caught Gastroenteritis and a doctor at Royal Lancaster Infirmary asked if he had the condition.

Mum-of-two Gill said: “We first noticed when he was born he had an unusual head shape, but even though we asked questions were told it was nothing to worry about.

“We’d never heard of Cranio but I had always had an instinct with this visible bone running through the front of his head something wasn’t quite right, so as soon as the doctor said it, we came home, researched the term and immediately knew it was a possibility.

“I contacted a Craniofacial support group Headlines and they were fantastic. They put us in touch with Alder Hey, we went for a consultation and just by looking at him the doctors confirmed it - half the team at Alder Hey believed Harvey to be the worse they had seen.

“Because of his age Harvey required more invasive surgery than had he been younger.”

Remarkably, after the first operation, Harvey spent just two days in intensive care and was back home with mum and dad and older brother Sam, now 11, just four days after surgery. His stammer disappeared completely.

“He was in theatre over seven hours, he also had to have a blood transfusion, they removed two thirds of his skull, re-modelled it and fitted it back with screws and plates.

“He couldn’t see for 24 hours because the swelling was so bad,” said Gill.

However, at the start of this year, football-mad Harvey, a pupil at St Williams Catholic Primary School in Pilling, had a relapse, suffering with excruciating nocturnal headaches and tiredness.

Scans at Alder Hey revealed pressure and hypertension on Harvey’s brain, forcing doctors to act before more permanent damage was done.

Harvey spent eight days in intensive care and was violently sick following the delicate operation due to the change in pressure on his brain.

“This was a much riskier operation as it was to be the back of his head and being older the bones were thicker so harder to manipulate,” Gill said,“This time he was in theatre 10 hours, the team was fantastic and Mr Duncan in particular is an amazing man.

“It was the worst moment of my life waiting for the call to say the skull was off and then even more terrifying waiting for him to come out of surgery.

“Harvey was so chilled out and just kept saying ‘if the headaches go away I’m not bothered’. Even the anaesthetist called him a cool customer!

“Afterwards Mr Duncan said it was no wonder the headaches were so severe as his skull had been so tight, when they removed it it actually had an imprint of his brain!”

Now Manchester City supporting Harvey is fighting fit back at home and looking forward to getting back on the pitch himself, re-joining his team mates at Cockerham Juniors, though his doctors have ruled him out of sports for the next six months.

Speaking after his surgey Harvey said: “My head is brill now and I have not got that horrible feeling!”

Gill added: “We just want to thank everybody who has prayed, sent cards and in any way supported us.

“We are so humbled by all the well wishes for our little man and for all the help to our other special boy Sam, who has been so supportive of Harvey.”

The couple are hoping Harvey’s story will help raise awareness for other parents, who may have worries and not have heard of the condition.

“Many babies are born with unusual shaped heads but if you are at all worried please go to the doctors and insist on a referral” said Gill.

For more information visit www.headlines.org.uk