Alice Cooper, seven, was in so much pain she cried herself to sleep at night and developed her own coping strategies to get through the day.
Her mother Emma asked doctors to give Alice a scan, after suspecting something was wrong with her neck when she was eight weeks old.
But despite repeated trips to her GP over the next six years, she was repeatedly told Alice’s pain was muscular and to give her anti-inflammatories or “rub baby oil on it”.
Mrs Cooper, from Blackburn, Aberdeenshire, was even told by one doctor it was “irresponsible parenting to push for an MRI [scan] when there is absolutely nothing wrong with your daughter”.
Just four days after a scan was finally carried out last summer, the 41-year-old was told Alice needed major brain surgery within six months or she would lose the use of her arms and legs.
Now, just nine months after surgeons removed part of her skull and detached the bottom part of her brain from the spinal cord in a risky operation, Alice is enjoying life pain-free.
Mrs Cooper is now sharing her story in an effort to raise awareness of Alice’s condition – Ciari 1 malformation – to help doctors and families recognise the signs of the rare anomaly.
“When I think about what she went through for so long it makes me really angry,” she said. “It’s so rare it’s not the sort of thing a GP would know to look for. But it was just one fob off after another. They never really looked into it. I was at the doctors every four to six months.
“She was my fourth baby so I noticed straight away something was not right with her neck. She cried herself to sleep most nights but then when we would get to the doctors she would seem fine. If she coughed or sneezed she would be in agony.”
By the time Alice had her surgery last September, more than an inch of her brain was outside her skull.
Mrs Cooper said the condition caused the lower part of the cerebellum, the part of the brain which controls balance, to attach itself to the spinal cord too early.
This meant that as she grew the brain was pulled out of the skull and into the top of the spinal canal.
Mrs Cooper said: “Most people with Ciari are diagnosed with a herniation of between three and seven millimeters, and that can cause severe pain, but Alice’s was 26.3mm.”
Alice was in so much pain she often had to stop what she was doing and lie flat on the ground until the pain in her neck eased.
Mrs Cooper said: “She could be riding her bike and then just get off it and lie down on the ground. It was only for a few seconds and then she’d get up and be off again. Like all children do so well, she found her own coping strategies. But it was really hard to watch.”
Surgeons removed a 2.2cm sq piece of Alice’s skull, as well as one of her vertebrae in her spine. They also had to “laser off” the cerebellar tonsils, the lower part of the cerebellum, from the spinal cord. Having had part of her skull removed, Alice is aware that her brain is not as protected as her peers. She has had to stop playing football and her friends know to hug her under her arms and not around her neck.