As her one-year-old son Dante bashed his head against the wooden floor, crying in agony, mum Debbie Searles was once again at her wits’ end. She’d been struggling with the problem since his birth and conditions from colic and ear infections to autism had been suggested and checked out by specialists.

Constant pain meant Dante (now 2) had never slept for more than two hours and medical experts were at a loss to explain his devastating condition, let alone cure it. “I knew in my heart that something was seriously wrong with him. He couldn’t sleep, which was exhausting for all of us, and it was so scary to see him banging his head like that,” says Debbie (36), who lives just outside Christchurch. “Then he was referred to a neurologist to see if he had epilepsy. An MRI scan was performed to see what part of the brain might be affected and that’s when they found out what was wrong with him.”

When the scan results came through, doctors fi nally discovered the shocking source of Dante’s excruciating pain – his brain had been squeezed down his spine and was actually in his back. “We expected the results to show he had epilepsy, but it wasn’t that at all. It took more than an hour for the doctors to get back to us. By that time, I was bracing myself for bad news,” says Debbie, who was waiting anxiously outside the hospital room with her husband Donald (44).

The doctors found that Dante had a rare brain condition called a chiari malformation, when the hole where the spine enters the skull is too large and the brain gets squeezed down through it. Incredibly, Dante’s brain tissue had been pushed so far down, it was at the same level as his shoulder blades. “Because of the pressure on his brain, he was getting terrible headaches,” says Debbie. “They were so severe that his only way of coping was to bang his head on the floor. He couldn’t sleep because of the pain.”

Debbie also discovered why Dante would sometimes remain motionless in bed. When he was lying down, the brain tissue was squashing his spinal cord, paralysing him. The diagnosis was devastating but there was even more bad news to come – Dante needed urgent surgery to take the pressure off his brain.

“When I found out what surgery would involve, I was so worried. Basically, they were going to take off a piece of Dante’s skull at the back and shave some of the spinal bone away to make more room for his brain,” she says. “I was extremely scared for my son because it was such a complex procedure and there could be many complications.”

But Debbie knew that not having the surgery would be even more hazardous for Dante, as up to a third of all people with a chiari malformation die. She and Donald decided the operation was a chance they had to take. The three-hour procedure took place a year ago and, since then, Dante has had even more health hurdles to overcome. He contracted meningitis after the surgery and was very unwell.

“It was an extremely trying time for us all,” says Debbie. “Poor little Dante had a lot on his plate, but he soldiered on.” But now, every day brings a slight improvement in her son’s health. “He’s much happier now,” smiles Debbie, as Dante toddles up to her for a cuddle. “Although he still has a little piece of  his brain in his spinal cord, he has finished his treatment. He’ll need speech therapy for a year and will need a teacher aide when he goes to school, but apart from that, he’s just an ordinary wee boy.”

Debbie, who also has a daughter, Victoria (8), has found out Dante is the only child in the South Island with the condition. “It was very isolating to be the only mum in half of the country with a child going through this. I felt there was no-one else around that could support me and understand what we, as a family, were going through.”

Since his operation, Debbie has been in touch with four other families in the North Island and has set up a support group. It’s a joy for her to see Dante finally catching up with other kids his age and enjoying being an active little boy, finally free of pain. “He can even do a roly-poly now! It’s something that would have been totally impossible before his surgery,” she says. “Seeing Dante run around with his sister and being an ordinary two-year-old brings a huge smile to my face.”

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