SAN DIEGO — There are three words no parent wants to hear when discussing their child’s upcoming surgery. Risk of death.
That’s where the spinal surgeon lost my wife in that conversation two years ago. She told me later that she zoned out and what followed was a blur. That included the possibility of paralysis.
My breakdown came later, at the children’s hospital on the morning of the surgery. When a team of physicians wheeled my 13-year-old little girl past the red line that cordons off the operating rooms, I started bawling.
“Did you know June is National Scoliosis Awareness Month?” I recently asked my teenage daughter, Jacqui.
“No, that’s not a thing,” the 15-year-old scoffed.
The young lady is confident, opinionated and argumentative.
I can’t imagine who she takes after.
Yes, I assured her, National Scoliosis Awareness Month is really a thing. And an abnormal curvature of the spine is most certainly a thing and something that people — especially parents — should know more about.
There are both juvenile and adolescent scoliosis. The former is slightly more common in boys, the latter much more common in girls. No one seems to know what causes scoliosis. Adolescent scoliosis is usually detectable during a growth spurt. It’s a serious condition, but some people can live with it if the curvature isn’t too large or increasing too rapidly.
According to experts, only about 0.5% of young people who develop scoliosis require treatment. An even smaller percentage will require surgery to straighten the spine. In some cases, bracing may slow the curve.
Jacqui, in fact, required two surgeries, one at 13 and one at 15. The operation consists of inserting rods and screws, and sometimes they break or come loose.
Today, she’s fine — and able to help her old man conduct an interview with New Jersey-based orthopedic surgeon Dr. Rahul Shah.
After medical school at Rutgers and a residency at Yale New Haven Hospital, Shah went on to become a nationally renowned specialist in treating scoliosis.
I asked the questions, but Jacqui wrote them. That explains why the interview went better than usual.
“In simple terms, what is scoliosis?” I asked, reading the index card she handed me.
“It’s an abnormal curvature,” Shah said. “The spine has the basic curves it needs, and it’s typically fairly straight. Most curves are less than 10 degrees, but anything more than 10 degrees is considered scoliosis.”
“Is it genetic?”
“It tends to run in families,” he said. “But sometimes, it skips generations or crosses siblings.”
“How can it be detected?”
“If it’s adolescent scoliosis, during a growth spurt, look at their shoulders, their hips, and see if they’re level,” he said. “Also, when they bend forward, pay attention to the shape of their spine.”
“Why is it important to detect as soon as possible?”
“Now that there is more awareness, we’re able to catch more cases,” he said. “And maybe we can avoid surgery because sometimes bracing can work. The goal is to arrest the curve progression and keep it from getting worse.”
Finally, I was curious about how the doctor found his way to this specialty.
“My attraction to scoliosis came from my dad,” he said. “I’m the son of an immigrant. And he had scoliosis. Over time, he compensated. But it affected him in ways that he could not have imagined. He felt deformed but, because he didn’t speak English, he couldn’t express it.”
For Shah, scoliosis is personal.
“In my view, it touched my life in so many ways because I’ve seen it and I’ve lived it,” he said. “I know what it is. And I know the difficulty that folks have with it. Then it’s all about asking, ‘How I can optimize life for people who have that?’ That’s what drives me.”
Be glad it does. As my family knows, the battle against scoliosis is real. Fortunately, our children have in their corner a fierce warrior.