Faith, Family, and Scoliosis
I typically don't write about my family life or my faith in my columns for this website, but I hope you'll indulge me on this rare occasion, since I'm feeling the need to get my thoughts on an ongoing personal struggle down in writing.
A child's annual physical at the doctor's office is typically more of a formality than anything. A yearly exam is required to attend school in most parts of the country, and it usually lasts no longer than 15 minutes. The doctor looks the child over, and asks a few questions. Parents voice any concerns they might have. The appointment ends with smiles, and everyone goes their separate ways.
The doctor's not supposed to actually discover anything wrong with the child.
Last year, my son's pediatrician had just about wrapped things up and sent us on home with a good bill of health. All that was left was a quick scoliosis check on my brand new 11-year-old (his birthday was a day earlier). As the doctor slid his hands along my son's back, I watched his eyes narrow with concern.
"Okay," said the doctor. "It looks like we've got some mild scoliosis. It appears mild anyway, but we should get an x-ray just to make sure." At least, that's how I remember him saying it.
He insisted that there was little to worry about, and I believed him. I knew that mild forms of scoliosis weren't terribly dangerous. Most didn't require treatment — just annual monitoring.
The doctor referred us to the other side of the medical complex we were at, to a radiology department in another building. There, I sat in a waiting room with my daughter (who was eight at the time) for just a few minutes until the x-ray tech was finished with my son.
Afterwards, the tech asked if I wanted to see the x-rays. She explained that policy prevented her from commenting on them, but that I, as a parent, could take a look at them before she sent them off to the doctor (which she was about to do).
"Okay," I said, thinking I wouldn't be able to tell much from them.
She brought the x-rays up on a screen, and when the image settled in my mind, my breath left my body. What I saw was a torso with a spine that looked closer in shape to the letter 'S' than it did a vertical line. I knew at that moment that there was nothing mild about my son's condition.
The next few days were incredibly frustrating. The x-ray had been taken on a Friday morning, and considering the perceived severity of what I had seen, my wife and I had expected to hear back from our son's doctor by the end of that day. When we didn't (even after we had left a message for him with his assistant), we were left feeling not only helpless but scared.
'Was the situation so serious that the doctor had to consult specialists before even getting back to us?' we wondered.
Over the weekend, when we weren't thinking about what the future held, we agonized over why past examinations had revealed nothing. We knew our son had been routinely checked for scoliosis in previous visits (like every other kid his age), and no problem had ever presented itself. The condition, after all, doesn't suddenly appear in drastic form. It's almost always detected in its early stages, observed, and addressed only if the spine progresses beyond a certain degree of curvature.
We both suddenly found ourselves closely scrutinizing our son's shoulders whenever he walked into the room. One of the key symptoms of scoliosis — we found while Googling the condition — was uneven shoulders. Most of the time, he looked fine to us, but when he stood a certain way, we did notice a subtle variance — the kind that would be discounted as poor posture under regular circumstances. Beyond that, he looked completely normal, and had never complained of any back discomfort.
We would later find out that because the two curves in our son's spine were roughly of the same degree, they counteracted each other, and kept his body fairly straight. This was also why his scoliosis had appeared mild in the physical examination.
I spent a lot of time praying that weekend, when others weren't around. I prayed in the car. I prayed in bed. I prayed at church. I sometimes prayed on my knees. I sometimes prayed while laying on my stomach on the floor. I prayed that my son would receive good, effective treatment, and that he would suffer no long-term physical problems.
You see, prayer had always worked for me. For most of my life, I wasn't someone who prayed often, but when I did, it was about something pretty darned important — sometimes even life-altering. God had always listened.
Sometimes my prayers were answered in ways other than what I was expecting, but they were indeed answered. One answer from a few years ago was so profound that I found myself later adjusting my prayers to start thanking God for what he had given me, rather than asking him for things. I knew that I was blessed, and I knew that those blessings didn't come from simple luck or coincidence.
On Monday morning, I called the doctor's office again and left a message. When we didn't hear back by late afternoon, I called again and learned that Monday was the doctor's day off. Great! I spoke to a receptionist who assured me that my messages were in the system, and that the doctor would see them as soon as he logged into it.
On Tuesday morning, when we didn't receive a call by midday, I left another message. In the early afternoon, the doctor finally got back to us.
He apologized profusely for the delay, and explained that the x-rays didn't come in until Monday, after the weekend. He had seen them for the first time that morning. He told me that the curvature of our son's spine was worse than he had believed from the physical examination — something we'd already figured out. Each of the two curves exceeded 30 degrees deviation, according to him, which meant that they would, at minimum, require bracing.
He referred us to a spine specialist — a surgeon, who he knew personally and would talk to on our behalf to try and get us an appointment as soon as possible. He explained that it was important to get our son looked at quickly, because without treatment, the curvatures ran the potential risk of getting worse.
Over the next few days, my wife and I waited for a call from the surgeon's scheduler, but it didn't come. We got back in contact with our son's primary doctor who expressed difficulty in getting the surgeon to return his calls. We decided to call the spine center that the surgeon practiced out of directly, and schedule an appointment. Unfortunately, the earliest available date was over a month out, and it would be with a different surgeon than the one that was recommended. We went ahead and scheduled it, figuring when could cancel it once our son's doctor got in touch with the first surgeon to get us an earlier appointment.
Discouragingly, that didn't happen. Our son's doctor did get a hold of the surgeon, but the surgeon couldn't squeeze us in any earlier than the second one could. We kept the appointment with the second surgeon, who the first one had expressed complete confidence in.
It didn't make any sense to us how a condition that we were told required quick attention couldn't have been prioritized sooner than a month out, but repeated tries to move up the appointment failed. We were also told that Children's Hospital in Denver wouldn't be able to get him in any sooner.
That month was a long one. I prayed every day for good news while keeping a close, neurotic eye on my son's body for subtle changes. Some days I thought I saw differences. Other days, he looked fine. Internet research, and the possible ramifications of scoliosis, had freaked me out enough that I eventually stopped researching the topic.
One day, I was walking up to my daughter's school to pick her up once the bell rang. The school crossing guard (an elderly woman who I didn't know well), out of the blue, asked me, "Do you have back problems?"
"Back problems?" I asked. "No. Why?"
"Okay," she said. "It's just that your shoulders look uneven to me, and I thought you might. I have back problems too."
Her response had particular meaning to me that she couldn't have possibly known. In my prayers, I had been asking God to transfer my son's condition over to me. I think it's pretty common for parents to wish to bear their children's suffering for them, although in my son's case, he wasn't doing any actual suffering. Still, I had been asking God to let me take on the burden for him, knowing in the back of my mind that such a scenario wasn't going to come to fruition. It didn't reflect my belief of how God operated, but I had figured in my desperate thoughts that it was worth a shot.
Still, hearing the crossing guard's words meant something to me. It meant that God was listening, and that he was letting me know he had heard me.
The day of our appointment with the surgeon finally rolled around. My son was x-rayed first, and then he, my wife, and I waited in the doctor's office while the fresh image of our son's spine was spread out across a screen on the wall. It was the first time my wife had seen what it actually looked like. Up until then, all she'd had to go on was my verbal description of what I had seen a month earlier, and similar-looking x-rays that I had found on the Internet. It was clear that what she saw disturbed her, though she kept on a good face for our son.
When the surgeon stepped in, he introduced himself, looked at the x-ray, and seemed fairly taken back by it. "Those are some big curves," he remarked.
He measured them using some software, and notified us that the curvature angles were not in their 30s, as we had been told. They were in their 50s. That was not good news.
It wasn't that our son's condition had worsened since the previous x-ray. It hadn't. The curves had simply been calculated incorrectly by his primary doctor, who of course wasn't an orthopedic specialist.
Anything over 45 degrees is typically when a fairly complex surgery (which includes fusing and spinal rod placement) is recommended as the only effective treatment. The surgery stunts the patient's horizontal growth, and comes with a risk of degenerative back problems later in life. It does, however, mostly correct the curvatures.
The description of the surgery (including the amount of permanent metal used) horrified us, but the surgeon gave up hope that because our son's relatively even curves had thus far kept his body pretty straight, there was a good chance he could get away with just being braced.
The idea was to fit him with an orthotic brace, and then check back in every six months to see if it was working. The point of wearing a brace isn't to correct the spinal curve. It's to hopefully keep the curvature from getting any (or much) worse while the young patient grows taller.
Before the bracing, my son would have to have three MRIs done on his body to determine if his scoliosis was idiopathic (the most common type with no clear cause) or secondary (a symptom of a more serious, possibly neuropathic condition). The three imaging procedures were done within two sessions, due to how long each of them lasted. I sat with my son through both sessions, watching his legs sticking out of a large, very loud machine as I prayed to receive the first good news throughout this entire ordeal.
Fortunately, it came. Nothing of additional concern showed up on the MRI.
We were then referred to an orthotist who took my son's measurements and ordered what's referred to as a Boston-style brace. It's made of hard plastic and foam, and isn't nearly as obstructive as the braces some of us might remember from the 1980s — the kind worn on the outside of the clothes that came with a metal chin guard.
A Boston brace is worn over an undershirt and under a regular shirt, and doesn't come up above the arms. It's secured in the back with two Velcro straps, and it isn't particularly noticeable to most people. However, it's still awkward and somewhat limiting to the wearer. In my son's case, it had to be worn 23 hours a day, every day.
The best-case scenario at this point was that my son would get away with wearing the brace (graduating to larger ones as needed) for the next five or six years. This sounded like an eternity to me, but that's how long it would likely be before my son would stop growing. Once a body stops growing, so does the progression of scoliosis. The hope was that the brace would keep his spine's curvature from getting worse during that time.
The thought of my son being confined to the hindrances of a brace for what was the equivalent of half of his life (up to that point) was not a pleasant one. It was nearly impossible to wrap my mind around, but it was still preferable to the surgery.
I was also worried about the treatment he would receive from his classmates. He was just entering middle school — a tough time for a lot of kids, after having been bullied a bit during his elementary years. Though his brace was relatively discreet, it was still noticeable whenever he'd bend over to tie a shoe, or reach for something high. I expected him to receive a good amount of teasing.
Fortunately, it hasn't been much of an issue, and my son quickly proved himself to be a trooper with the lifestyle change. He liked that he was able to get a military camouflage print on his brace — an option put forth by the orthotist (who turned out to be one of the most thoughtful and caring professionals we could have asked for). My son has never complained about having to wear the brace (other than its incompatibilities with some of his clothes, which we remedied with a trip to the mall). He's even joked with his friends that he has "rock hard abs" once they've noticed that he has something hard on under his shirt. In fact, I think my son's had an easier time with the brace than I have.
I don't like the thing. I don't like that it leaves nasty rashes from pressure and temperature on my son's skin. I don't like that the screw-heads on its back straps sometimes tear holes in my son's shirts. I don't like that the brace requires frequent adjustment by the orthotist in order to keep my son's shoulders even. Most of all, I don't like not knowing whether or not the brace is doing him any good at all.
After my son had gotten used to the brace for a few weeks, we checked back in with the surgeon. He had some more x-rays taken (this time with my son in the brace) and said that it was in a good position to help him. He then dropped a bombshell on us.
"It's important that we set our expectations realistically," he told my wife and me. "He's almost certainly going to have to have the surgery."
It seemed like a stark reversal from our discussion from just a couple of weeks earlier, where he had told us that there was a good chance my son could avoid the surgery. Now, he was saying that it was probably going to have to happen, and that the brace could only buy my son some time, and hopefully let him grow a bit taller first.
On the drive home, my wife and I pondered why we had received such mixed messages. We wondered if the surgeon had forgotten his earlier conversation with us, about our son's even curvatures keeping his body relatively straight. Either way, we decided that the brace was the best option in the meantime, and we hoped than in six months it would prove effective enough to keep the surgery at bay.
After six months, we returned to the surgeon's office. The good news was that our son had grown an inch, and that the curvatures of his spine hadn't grown measurably worse. The bad news was that the surgeon didn't believe the brace was doing enough to help. He referred us to Children's Hospital in Denver.
We got into Children's Hospital after three weeks, and spoke to a different spine surgeon — this one more experienced and more thorough in his assessment. After reviewing my son's x-rays, he reiterated the seriousness of his condition, and laid out three courses of action:
Do nothing, and hope the scoliosis didn't progress (an option he clearly didn't favor, considering the high risk that it would get worse without treatment).
Have my son continue to wear his brace, and check back with his office every three months (instead of every six) to monitor changes to his spine.
Have the surgery done.
Doctors are of course reluctant to try and sway the decision-making processes of patients (and their parents) due to liability concerns, but this one did a good job of presenting the pros and cons of each option. And he didn't sugarcoat anything.
He said that there was no scientific evidence concluding that bracing stabilizes spinal curvatures of more than 40 degrees. Those typically grow worse, regardless of bracing. Yet, he was willing to accept the wait-and-see approach of option #2.
The problem with waiting, however, was that a sudden growth spurt — one that could take place over just a few months — could result in my son growing three or four inches in height, and his curvatures potentially worsening by up to 15 additional degrees. If the curves grew to the point of 70 degrees or so, vital organs would be in danger of being crowded out and damaged. Also, the corrective surgery would then become more complex.
Still, there was a chance that my son could grow taller without any significant change to the curvatures of his spine. That chance stood at probably less than 50%, but it was certainly there.
On the surgery side (option #3), the procedure would certainly put an end to the risk of my son's scoliosis worsening. The curves would be permanently corrected to about 20 degrees each. However, his growth would be stunted. While his limbs would grow longer with age, most of his torso would not.
At the time of the appointment, my son stood at exactly five feet tall. The surgical straightening of his spine would add an immediate inch and a half of height. Any future height would come almost solely from his legs, and he'd most likely end up being about three inches shorter in total than the height he would have otherwise reached.
Of all of the things I could have ever imagined one day discussing about my son, the possibility of him having disproportionately long arms and legs was never one of them...but that's where we were at. More importantly, the surgery would make it more likely that my son would have degenerative back problems later in life. The thought of that was almost too much to bear.
Again, nothing was for certain, but nothing sounded particularly appealing either.
"You got an unfair deal," the surgeon told my son. "But that sometimes happens."
That appointment with the surgeon was last week, and my wife and I are close to making a decision on how we're going to proceed. We've been including our son in that decision, though we don't think his adolescent mind can fully grasp all of the considerations. It his age, he shouldn't have to. He's not even 12 yet.
We wish we knew things we couldn't possibly know, in order to choose the best course of action. But that's not how life works. Fortunately, God has been helping us out.
He has given my wife and me the internal strength to help our son through this period in his life. He has given us the financial means for which to help him. He has given our son and our daughter personal gifts that we will never take for granted. He has also blessed us with supportive friends and family, and sources of comfort, empathy and knowledge.
Scoliosis shows up in only two to three percent of children, and only ten percent of those kids ever end up requiring medical intervention. That's why I find it miraculous that the three people we know, whose families have gone through this same scary ordeal, just happen to be individuals who have been directly instrumental in another area of my son's growth — his mental growth.
His first-grade teacher, his second-grade teacher, and his current middle school advisor all have children who've struggled with scoliosis. Some elected for the surgery. Some did not. But all have been of help through their wisdom and spirit. And that is truly a blessing.
I didn't write this column to conjure up sympathy. Lots of families deal with health concerns, and many of them are more serious than the one my family is currently working through. This was more of a therapeutic exercise than anything else, but if it happens to help any families who might find themselves going through a similar situation in the future, it will have been worth the time.
All I would ask is that if you're the praying type, please consider including my son, Chase, in one of your prayers. I believe that the power of prayer is real, and I would be forever grateful.