Walking the long curvy path of scoliosis

Genetics can be so random.

In some families it creates a genius who takes human knowledge to places the rest of us never imagined. In others it creates a disease that robs the world of a promising young life.

Most families find themselves between those two genetic extremes, whether it’s a set of green eyes no one can explain, a 6-foot-2 frame in a family of 5-foot-10s, or a predictable set of curly locks on one child but not the other.

by BruceBlaus via Wikimedia Commons.

In my family, it causes scoliosis, a condition that causes the spine to grow crooked.

Some curves are mild and require no medical treatment.

Others require patients to wear a full-torso brace 20 hours a day, seven days a week until they stop growing. Depending on the onset of the condition and the age of the patient, that could be months or years.

The most severe curves can only be straightened by a skilled surgeon who fuses the patient’s vertebrae together with screws and metal rods.

Celeste, our 12-year-old daughter, zoomed through the first two curves in less than two years, and is standing just outside the operating-room door of the third.

She’ll roll through that door Wednesday morning, and God willing roll back out some 10 hours later with a straight spine.

During that time, every beat of my heart will whisper a prayer for God’s grace to guide the hands of the nurses and doctors in whom we are entrusting our baby doll’s life.

Bracing against scoliosis

We found ourselves on this path two years ago when Celeste leaned over to touch her toes during a routine physical. The doctor saw a slight curve in her spine, but I thought little of it. While my spine is straight, my two brothers, sister and father all have some degree of scoliosis and lead normal lives.

That’s genetics for you, I thought. No need to worry.

The doctor sent us to an orthopedist, who we saw a month or so later. The X-ray showed a curve even my untrained eyes could see, but it didn’t require bracing. Doctors generally monitor curves of less than 20 degrees, brace curves between 20 and 40 degrees, and consider surgery for curves greater than 40 degrees.

Celeste was a few degrees shy of needing a brace. With two years of growth still in her, the doctor wanted to watch the curve closely and asked us to come back for another X-ray six months later.

We returned to find that Celeste had grown four inches, a growth spurt that twisted her spine well past the point of bracing. The orthopedist sent us to an orthotist, who fit Celeste for a full-torso brace she would have to wear 20 hours a day every day. She could take it off to shower or physical activities, but she had to wear it all the other hours of the day.

And she did.

When the thermostat soared above 90 degrees and kids usually want to shed as many clothes as modesty allows, Celeste wore her brace. When kids at school asked her annoying questions about that “thing sticking out of your back,” Celeste wore her brace.

She understood that even though it wouldn’t fix the curve in her spine, it could slow the progression of the curve and help patients avoid surgery.

“I don’t want surgery,” I heard Celeste say several times.

Neither do I, I thought whenever she said those words. No need to worry, though. You’re doing everything you can.

Turning to Johns Hopkins Hospital

Another six months passed, and the time came for a follow-up appointment with the orthopedist. Again, I wasn’t worried. Celeste wore her brace faithfully, so I was certain it was working.

Only it wasn’t.

Celeste had grown another two inches, bringing the curve perilously close to the surgical mark. I walked away from that appointment questioning everything, certain only of my uncertainty.

The doctor ordered a new brace and physical therapy, but in my mind it wasn’t enough. Celeste was doing everything she was supposed to, but was still losing the battle. We needed another opinion.

Without talking about it with each other, Karen and I both had the same idea: the pediatric orthopedic specialists at Johns Hopkins Hospital in Baltimore. We took the earliest appointment they had, and in the intervening six weeks did enough research on scoliosis to write a master’s thesis.

I walked in with just one question: What could we do to avoid surgery and prevent the curve in Celeste’s spine from worsening? See a different orthotist to make a different brace? Try physical therapy? Pilates? Yoga?

If anyone could answer my question and guide us on the best path to avoid surgery, I knew it was the world-class physicians at Johns Hopkins. But the X-ray showed only one solution: surgery.

In the six weeks we waited for the appointment at Johns Hopkins, the curve in Celeste’s spine worsened to the point where surgery was the only option. Nothing else would work. Without it, the curve could progress to a debilitating point, and Celeste could face a lifetime of back pain, breathing difficulties, and heart trouble.

Doctors could not predict when the curve would stop, especially since Celeste has not reached skeletal maturity. It was best to operate now than wait for the curve to worsen. The sharper the curve, the more the surgeon has to manipulate the vertebrae and spine.

It’s time to worry, I thought.

Thankful for a surgical fix for scoliosis

We sat in the cold examining room listening to the surgeon talk confidently about the need to operate, but my mind was elsewhere.

We’re not here for this, I thought. I just want to know if we need a different brace or what kind of physical therapy will work. We didn’t come here to talk about surgery.

Only we were talking about it.

The surgeon was telling us how he would fasten screws to Celeste’s vertebrae and attach two metal rods to straighten her spine. She’d be in the hospital for four days and out of school for two months, assuming there are no complications.

But we’re not here for this, my mind pleaded. Her curve isn’t that bad yet. How could it have worsened so much in such a short period of time? It was only six weeks.

The surgeon explained the recovery, a process that could take a year. No lifting anything for several weeks, not even our cats. No twisting. No bending over. No physical activity. No basketball this season. No horseback riding. Her winter chorus concerts are out as well since she won’t be in school. We’d need a tutor. The list was endless.

Celeste sat silently as Karen held her hand. She couldn’t understand the full implications of what the surgeon was saying. She looked at me for reassurance. Children don’t need doctors to tell them everything will be OK. They need their parents for that affirmation, to be their strength in times of adversity.

But as the surgeon continued to explain the operation and recovery, a soft weep cracked my veneer of fatherly invincibility. Celeste heard it, and started to break down as well.

Pull it together, I thought. If Celeste is going to make it through this, she needs you to be strong.

We muddled through that appointment, and the intervening weeks have been a blur of research, paperwork, doctor appointments, sleepless nights, worry headaches, tears, and support.

In fact, the support of family, friends, our congregation, and co-workers has fueled us these recent weeks. It reminded me of how much I have to be thankful for.

I’m thankful we can treat scoliosis. Many parents have children who are fighting fatal diseases or conditions that baffle the world’s best doctors.

When Celeste fully recovers from surgery, her back will be straight and she will no longer need that brace. She’ll even be taller. The only lifetime restriction she faces is a ban on full-contact sports. So football and rugby are out.

I’m thankful to be close to Johns Hopkins Hospital. Some people live hours or days away from world-class medical treatment. Baltimore is a short drive from our house. We can barely make it through a One Direction CD on the drive, assuming traffic isn’t bad.

I’m thankful for the outpouring of support we’ve received. I have no idea how people without help could make it through a period such as this.

I’m even thankful for cracking in the doctor’s office. I felt silly at first because, as we all know, real American men don’t cry, especially not in front of their wives, children and doctors. But I stopped feeling silly after giving it some thought. After all, doesn’t every girl deserve a father who’ll cry for her?

And come Wednesday, as Celeste undergoes a long surgery and we wait impatiently nearby, I’ll be thankful for God’s watchful eye.