Mother’s six-year fight to find cause of daughter’s pain

Health: Rare condition went undiagnosed by GPs

A mum has told how her girl spent six years in agony after doctors failed to spot the signs that her brain was being pulled out of her skull and into her spine.

Alice Cooper was in so much pain she cried herself to sleep at night.

Just sneezing and coughing was excruciating for the seven-year-old.

Mum Emma begged 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 told Alice’s pain was muscular and to give her ibuprofen 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”.

But just four days after the scan was finally done last summer, the 41-yearold 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 free of pain.

Mrs Cooper wants to raise awareness of Alice’s condition, Ciari 1 malformation, to help doctors and families recognise the signs of the rare illness.

“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.”

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 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.

Surgeons removed a 2.2cm2 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 to alleviate pressure.

Her parents know that there is a chance that Alice may need future surgery if the cerebellar tonsils reattach to the spinal cord.

But the family is hopeful that it is a one-off and, after a four-month recovery, Alice is enjoying being back at school.

“It’s not the sort of thing a GP would know to look for”

RECOVERY: Alice Cooper is pain-free, much to the delight of mother Emma