Eight-year-old off to LA for treatment to stop spine from strangling heart, lungs
Michelle McMurty took one look at the X-ray of her daughter’s spine and knew it wasn’t good.
“I could tell it was quite severe,” she said on first seeing the extent of her eight-year-old Caitlin’s Scoliosis.
The X-ray showed her spine had two curves: one at 45 degrees and the other at 42 degrees. The curvature has now progressed to the stage where the top curve is at 55 degrees, and the bottom curve is 50 degrees.
It was just before Christmas when Caitlin first learnt she had Scoliosis – a potentially life-threatening disease.
It was discovered when her mother, Michelle, was tracing her fingers along her daughter’s back when she felt an odd lump.
Michelle said if the Scoliosis was left untreated, Caitlin’s curved spine could “strangle her heart and lungs”.
“We’d noticed for a while that she didn’t have great posture,” she said. They lay Caitlin on the ground and could feel her spine was not straight.
A general practitioner’s visit showed the curvature more prominently as Caitlin was made to do the “bending test”.
Caitlin was then referred for X-ray and was eventually seen in the middle of February at Waikato Hospital.
It was then the true extent of the Scoliosis was revealed.
Caitlin now spends about 20 hours of the day in a custom-built brace, the other four are “active hours” so her “muscles don’t get too lazy”.
But on Friday, Caitlin will travel from her Waitakaruru home in rural Waikato to Los Angeles for three weeks for treatment.
If she were to be surgically treated in New Zealand, it would mean inserting growing rods along her spine to straighten it and then a spinal fusion later in life.
It could also open her up to a lifetime of chronic pain, Michelle said.
On top of that was the fact that two doctors had told the family that there was a 100 per cent chance of complications when performing the surgery on someone under the age of 10.
“[Caitlin] is quite young to be diagnosed with Scoliosis, especially for how curved her spine is.”
Being diagnosed when you are young means the degree of the curve will progress a lot quicker, Michelle said.
That led them to look at alternative options.
In LA, the therapy will look to straighten Caitlin’s back without surgery. She will be the sixth New Zealander to travel over to the United States for it.
Another option that they might explore is a new surgery in Germany, which uses a flexible band to straighten her spine as she grows.
What attracted them to LA was that those doctors were trying to find out what caused Scoliosis, too. Michelle said it appeared a lot of places only seemed to focus on fixing the spine, instead of looking for a cause.
Caitlin said whilst it was nice to know treatment was possible, she was more scared about it now that she knew more about the disease.
“I thought it was cool before I understood what [Scoliosis] was. I just thought I was unique because I had a curved spine,” she said.
Michelle said treatment in LA will require them to visit once every three months, which could cost $30,000 each trip. If she was to get the surgery in Germany, that would be at least $80,000.
She just wanted to give her daughter “the best shot at a life that is normal and pain free”.
“It’s a big commitment but we’re willing to do whatever we have to.”
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