Oliver Cartwright was born with a rare disorder that meant the bones of his skull were fused together, stopping his brain from growing.
At only five weeks old he had the first of 158 operations that would slowly reshape his head, allowing him the space to develop.
Now 18, Ollie has beetrained as a chef but still needs more surgery.
In a frank interview, mum Jules tells of Ollie’s struggles growing up – and how she spent his first year unable to feel love for her son, through fear of his misshapen looks.
Jules, 51, says: “When I was 25 weeks pregnant the scans showed Ollie’s head was overly large and his eyes were too far apart.
“I spent the entire pregnancy having nightmares. When I first saw him when he was born I felt an awful mix of emptiness and guilt.
“Our friends and family didn’t send congratulations cards, they sent ‘with sympathy’ cards.”
Ollie was born four weeks early, yet still weighed 10lb 9oz. Because Jules was under anaesthetic, it was dad Mark, 49, who held him first.
But as Mark cradled him, Ollie stopped breathing – one of his lungs had collapsed.
Medics at Northampton Hospital rushed him to intensive care, then transferred him to the specialist John Radcliffe Hospital in Oxford.
Jules admits: “I was scared to see Ollie myself, Mark had to convince me to go and see him.
“It took me some time to build up the courage to look at him. I was scared of what I’d see.
“When I finally did, his strange features frightened me. He was fighting for his life on a ventilator but I could see his big eyes and back-to-front thumbs and I didn’t know what to do with myself.”
But his elder sister Ellie, now 22, adored her little brother instantly – rushing over to grab his hand and gazing at him adoringly.
Tests led to a diagnosis of Pfeiffer syndrome, one of more than 150 conditions that cause craniosynostosis – early fusing of the skull.
Left untreated it leads to severe brain damage, headaches, sight problems, learning difficulties and deformities as the growing brain pushes against the skull.
Jules recalls: “It was a lonely time, there were no support groups or forums back then.
“It took me a year to accept Ollie. The day I did, he was on his way into surgery when it hit me how much I loved him.” At three, a breathing tube inserted through Ollie’s neck fell out, leaving blood everywhere – and sending Jules into a panic.
Fortunately Ellie, just seven at the time, stepped in. Jules says: “She’d seen so much. She calmly got the phone and said, ‘Who do you need to call, Mum?’” By the age of nine Ollie had racked up 127 operations – and had begun to realise life was not as it should be.
“He used to love hospital,” says Jules. “He’d skip into surgery holding the nurse by the hand.
“But by nine he realised it wasn’t normal and started to hate it. He’s done runners, he dreads it so much.”
During one op, doctors found his brain had begun to grow into a gap at the back of his nose.
They had to cut it out, causing Ollie to lose his short-term memory and the ability to read and write.
Jules says: “He’s had shunts, he’s had a frame screwed on his face. They’ve tried to fix the holes in his skull five times, and he’s had meningitis nine times. There have been emergency ops, and then ops to remodel his head after a growth spurt.”
When Ollie was six, a titanium frame was screwed to his head to stretch the bones and allow his face to grow.
Jules said: “That was a hard one because the surgeon had to come and move the frame by 1mm with a screwdriver every day. It was horrible to watch.
“His medical team adore him and it helps me, when I hand him over again and again, to know he’s loved.
“We never quite know how he’ll be when he wakes up, but we have ways to check he’s still Ollie.
“He always asks for the same three things coming out of anaesthetic – a doughnut, sausages and orange juice. Then I know he’s OK.”
Ollie’s most recent op was in February. He has further agony ahead as his ankle bones have now started fusing too – yet he insists he is lucky.
He says: “It’s strange to look at all the photos of my face, but I know every op helped me get where I am today.
“I can live a pretty normal life and I’m lucky. I hope one day I can move out and maybe work in a top kitchen in some fancy restaurant. I love being a chef – for now, my speciality is fish and chips. But I don’t cook at home because Mum says I use too many pots and pans.
“At times I’ve felt frustrated but life’s going well now. I don’t need ops so regularly. I really dread those, but I know I wouldn’t be alive without my team of doctors and all they’ve done. I’m grateful they stuck with me and never gave up.”
Oliver said: ‘It’s strange to look at all the photos of my face changing after each operation. I know that every one of those operations has helped me get where I am today - I can live a pretty normal life and I’m lucky.
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