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Home / New Zealand

11-year-old beats the odds

David Fisher
By David Fisher
Senior writer·Herald on Sunday·
15 Dec, 2007 04:00 PM5 mins to read

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Demar Gear recovering. Photo / Doug Sherring.

Demar Gear recovering. Photo / Doug Sherring.

So far, Demar Gear has beaten the odds. The 11-year-old, who was expected to die on the operating table at Starship children's hospital, has survived complicated surgery giving her the chance of a longer life.

And if she continues to exceed doctors' expectations, this week she will return home to Rotorua with mum Courtenay Thrupp, 29.

The operation, which had an estimated 20 per cent chance of success, saw steel rods placed along Demar's spine to straighten the 90- degree bend crushing her organs against her ribcage.

The extent of the curve was obvious when she was x-rayed the day before the operation. Her spine was bent at right angles and warped sideways through the body.

A Starship radiologist gripped Demar's shoulders and leaned back to pull her straight.

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The day after surgery, she appeared to have grown a foot as her stretched and reinforced spine acted as a shaped, rather than tortured, frame for her body.

She could breath much more easily, and the skin across her chest had relaxed against her ribcage, instead of it being stretched thin across protruding bones.

While the surgery was successful, Thrupp knows it offered a reprieve rather than a solution.

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"I know it's not going to stop. I know there will come a day when we can't fix her."

Tuesday's operation had been cancelled at the last minute to make way for patients Starship thought had a better chance of survival and would live longer.

The news devastated Thrupp, with delays causing her disabled daughter more agony and reducing her quality of life.

Auckland District Health Board bosses rebooked the appointment after being contacted by the Herald on Sunday. Thrupp went ahead with the surgery knowing Demar was unlikely to make it.

It was the latest obstacle in years of fighting to give her daughter the best care possible.

Born in August 1996, Demar arrived healthy and huge, weighing in at 4.5kg.

Thrupp, aged 18 at the time, hadn't even heard of meningitis, which struck when Demar was five months old.

Earache was the first sign. Thrupp took Demar to the local doctor and was given antibiotics to fight the presumed ear infection.

When a rash appeared on her abdomen, she took Demar back and was told it was probably a side-effect of the medication. More medicine was prescribed.

"I was a young mother. I didn't know anything about it. I just gave her the medicine."

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Unknown to Thrupp - and the GP who examined her daughter - bacteria which inflames or infects the membranes around the brain and spine had entered Demar's body, changing her life forever.

When Demar woke the morning after seeing the GP, her eyes were crossed in a fixed stare.

She was rushed to Whakatane hospital, the closest at the time, and a lumbar puncture was done to draw out spinal fluid to test for infection.

Demar was already so twisted from the infection that the long, thin needle had to be driven into her head, rather than her spine, where the fluid is usually taken from.

The diagnosis confirmed pneumococcal meningitis, which has a low survival rate.

Demar was sent by helicopter to Starship hospital while her mother followed by car.

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She survived but was left with severe brain damage, spastic quadriplegia, cerebral palsy, epilepsy and hydrocephalus.

"I was shattered, but still had her," said Thrupp. "I was gutted her potential was taken. But I still had her."

Thrupp left the hospital with detailed instructions covering every eventuality.

Any risk-taking vanished. While Thrupp's grandmother loves fair-ground rides, Thrupp won't ride a roller-coaster, or travel in cars with fast or dangerous drivers.

"I'm the only one who knows how to care for her. Nobody is going to do anything to her if I don't know what it will do and what the side effects are. This is my gift for my child. I couldn't do it for anyone else."

The low chance of Demar surviving surgery led Thrupp to plan her daughter's funeral, bringing to Auckland the clothes she was to be buried in. She wanted a pink coffin - white was for children, brown was too gloomy, and, at age 11, "she's a young lady now".

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Demar was to be buried at Tane-atua, wearing her Barbie portable CD player powered by long-life batteries.

"I didn't want it to be a really sad time," Thrupp said.

Thrupp said when a friend asked what she would do if Demar failed to survive the surgery she had no idea.

Her life has been Demar's, and there has been no thought or understanding of existing outside that bond.

Of all that has happened, Thrupp has just one regret. "That she would call me 'mum'. I was always wanting to be called 'mum'."

The spinal surgery itself

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Demar Gear's surgery was invasive and brutal.

Orthopaedic surgeon Haemish Crawford opened her back from neck to pelvis to gain access to her spine.

Once inside the body, he was able to get hold of her spine and pull it back into alignment.

It was a considerable shift; the spine was bent at a 90-degree angle - eventually heading for 150 degrees - and was warped, looping out through one side of her body.

With her spine laid straight, Demar was stretched out along its length.

Then the joints in the spine were fused, with a bone graft used to hold the vertebrae in place from the neck to the pelvis.

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Eventually, the fused spinal column will act as the support for the frame on which Demar's body is carried. Initially, however, the spine is not strong enough. To take the weight, steel rods were laid along the spinal column and fastened to it with wires.

It's like staking a tomato plant which is not growing straight. The tomato stake holds the plant in place until it gets the strength to hold itself.

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