Faith, Family, and Scoliosis; Part 3
The end of one story and the beginning of another.
About six years ago, I used my voice as a columnist to detail a health challenge my family had been going through. I revealed how my son (my wife’s and my oldest child) had been diagnosed with severe scoliosis a year earlier — at the age of 11, and how that discovery had set us all back on our heels with fear, confusion, and serious questions about his future. I wrote about how it had changed everyday life for the Dalys, how it forced my wife and I to make some extraordinary difficult and consequential decisions, and how I often relied on my faith in God for strength and wisdom.
When I later looked back at that first column, I realized how dark and desperate much of it sounded. Doctors not returning phone calls; intense MRIs; my son having to wear an upper-body brace 23 hours a day for years to come (that might not even make a difference); the likelihood of major spine surgery to prevent my son’s spine-curvature from crushing his vital organs… It was a real downer.
That’s not to say that I would write it any differently if given the chance to go back in time. It was a painfully honest and candid piece, and it accurately described our situation. But it was only the first chapter of that story. So, when the next one wrapped up a year and a half later, I chronicled it with a second, more uplifting column. The piece ended with my son’s early recovery from the aforementioned surgery, and the sincere gratitude I had for the many people who had offered us their prayers and support throughout.
As I wrote at the time, those columns weren’t so much intended for informational purposes; they were more of a therapeutic exercise than anything. Still, I did hope they might help other parents going through the same ordeal, even if just to let them know that there’s light at the end of the tunnel.
In fact, they have served that purpose. I’ve heard from a number of parents of children with scoliosis since then, and I’ve been more than happy to answer (or at least try to answer) the questions they have. What’s become clear to me from those exchanges, however, is that I left the story on a bit of a cliffhanger. I really should have written the third chapter to kind of button things up. So, I figured it was finally time to do just that.
Don’t worry. This chapter won’t be as harrowing as the first two. That’s because things turned out pretty darned well. My son had an amazing recovery and is living a very normal life as a 17-year-old who’s about to graduate from high school and attend his first year of college in the fall. He’s of course not as flexible as he used to be (a reality with all spine fusions), and has some diminished lung capacity (permanent damage caused by his prior curves), but he’s in no pain, and can do pretty much anything he wants to (short of a handstand). He’ll probably have to deal with degenerative back problems later in life… along with a lot of people who’ve never had scoliosis.
Perhaps most surprisingly, he’s tall — around six feet. As I mentioned in the first two pieces, scoliosis limits one’s vertical growth, and the surgery (at least to the extent of which my son needed it) effectively prevents future growth from the waist up. Yet, my boy has defied the odds, mostly thanks to his legs (while not looking at all disproportionate), and is now taller than his old man.
I relayed this update to a mother who emailed me out of the blue last summer, just two days after her own 11 year-old son, Johnny, had been diagnosed with advanced scoliosis. She had found my columns online, and was taken back by how similar her family’s diagnosis story was to mine. As fellow Christians, she and her husband took some comfort from what I’d written, and we had a long, deep exchange about what to expect and the importance of faith. The discussion brought back some old memories, which would play an unexpectedly important role just a few weeks later — not with the mother’s family… but with my own.
You see, my son’s scoliosis story may have come to an end some time ago, but unfortunately… my daughter’s was just about to begin.
I had been thinking about Johnny a lot over those weeks. One of the few differences between his diagnosis and my son’s was that he had a C-shaped curvature of the spine, while my son had an S-shaped curve (aka “double scoliosis”). A physical symptom more common with the ‘C’ variation is uneven shoulders — one shoulder higher than the other. With that distinction fresh in my mind, I had trouble ignoring something I noticed through a camera lens in August when I snapped some morning pictures of my kids on their first day back to school. My daughter’s left shoulder hung decidedly lower than her right.
I studied the photos some more while she was at school, and when she arrived home, I asked her to stand perfectly straight so I could give her another look. Her shoulders were still uneven. I filled my wife in that night, and we ran some more visual tests, including having my daughter bend forward so we could check if there was a bump on one side of her back (another common symptom of scoliosis). We found one pretty quickly.
Part of me couldn’t believe it. We knew there was a genetic element to scoliosis, but we had been confident that we were in the clear when it came to my daughter. We’d had pediatricians check her closely each and every year following our son’s diagnosis, and they’d never found so much as a hint of it, including during her previous physical just six months earlier. Zip, zilch, nada. But what we were now seeing couldn’t be brushed off. We made an appointment with her doctor, and got her into the office a couple days later.
The doctor went through the standard visual and physical testing and — to my surprise — didn’t seem too concerned. “She might have very mild scoliosis, but nothing to be alarmed about, she said.
To me, those were famous last words, because they echoed almost exactly what my son’s doctor had told me years earlier upon first discovering his problem. I explained that to my daughter’s doctor.
“Well, if it’s something you’re concerned about, I can order some x-rays be done,” she said, framing it as a peace of mind measure.
I took her up on the offer, and my daughter and I drove a couple miles to the hospital to get her x-rayed. Within a couple hours, the results popped up in our medical portal and my heart sank when I saw the image. She definitely had C-curve scoliosis, and though it didn’t look nearly as bad as my son’s did years earlier, it wasn’t exactly mild either.
“Here we go again,” I thought to myself. I began praying.
I expected the pediatrician to call at any minute, and sure enough she did. “You were right,” she said. “It’s worse than I had thought.”
She began listing our options for specialists, but the choice was a no-brainer: Children’s Hospital in Denver — the same people who’d taken care of my son, gave us unbelievably good care, and performed the amazing surgery that had given him a new lease on life. Our first appointment was with one of the doctors who’d actually operated on my son. It was good to see him again, though I had hoped years earlier that I would never have to.
Studying my daughter’s x-ray, he measured her curve to be about 22 degrees. As a specialist dealing with extreme cases, it was probably on the low end of what he’s used to seeing, and about half of what my son’s initial curvature had been. That, along with my daughter being four years older than my son had been, and nearing the end of her vertical growth capacity (something that’s much easier to determine in girls than in boys), he was optimistic that no treatment would be needed.
This surprised me, but I was more than willing to accept the good news. Still, he wanted to see her back in four months to verify that there was little (if any) change.
Nothing of note happened during those four months, other than me sometimes wondering — when looking at my daughter’s shoulders — how I hadn’t noticed their unevenness earlier.
At the follow-up appointment, she was x-rayed again, and this time — unfortunately — the surgeon wasn’t as confident about his original prognosis. My daughter must have gone through a growth spurt, because her curve had jumped all the way to 27 degrees. The surgeon ran through our options, but the one he tepidly favored was still to do nothing. Because scoliosis stops getting worse when an individual is done growing, and because he believed my daughter would reach that point probably within the next six months, he figured we had time on our side.
I wasn’t confident about that, in part because he didn’t seem terribly confident about it. As had been the case with my son, we were trying to predict risk assessment with some unknown variables, and that type of thing can be maddening — especially from a parent’s perspective.
The alternative course of action was for her to wear a brace around her upper body, like the one my son had worn for over a year prior to ultimately requiring surgery. As I very well knew from our previous experience, bracing doesn’t fix scoliosis, but it can help control the spinal curvature from getting much worse. And at that point, after her curve had increased a full five percent in just four months time, I felt it was better to play things safe. The surgeon thought it was a good plan, but suggested we elect for a nighttime brace to avoid her having to wear it at school. I concurred.
I hoped to be able to use the same orthotist as with my son, in part because the guy practiced out of Fort Collins (which is a much shorter drive for us than to Denver), but mostly because we loved the guy. We really did. He was an older gentleman who had almost become part of our family when we went through this with my son. We had visited his office often to make adjustments to my son’s brace as he grew, and he took a real interest in us. He was a kind, thoughtful man, and we even bought him a Christmas gift one year. But we soon learned that he had retired, which wasn’t all that surprising being that he had sometimes talked to us about retirement.
So, we were directed to Children’s Orthotics and Prosthetics department that was right down the hall, and got her measured for a brace that very day. Fortunately, the process was far easier than it was with my son a few years earlier. It no longer required the patient to hold still on a table for over an hour while their torso was cast. Instead, my daughter simply had to stand there for a few minutes while the orthotist slowly walked around her with a special camera. Thank God for technology. Plus, our new orthotist was a super nice guy as well (perhaps it’s only special people who go into that line of work).
A few weeks later, the brace was ready. We returned to Children’s for the fitting and some final tweaking, and then we went home with it. As we knew would be the case, wearing it took my daughter some getting used to, especially when trying to sleep. The adjustment didn’t come without a few tears, but things got better within a few days, and now it’s a piece of cake for her.
We’ve already had one office follow-up, and we’ll be heading back to Children’s in July for the next x-ray to see how things are proceeding. With any luck, her curve will be the same or only marginally worse. With better luck, she will have stopped growing and will no longer need a brace or any other treatment. But there’s also a chance that things will be notably worse, and she will — at some point — need corrective surgery like my son. I hope and pray to God that doesn’t end up being the case, but I know she’ll be in good hands if it does.
Like the other two columns, this one wasn’t really written for educational purposes, nor was it designed to evoke sympathy. I just felt that the first story needed some public closure, and if it helps anyone affected to know how equipped modern medicine is to deal with this condition, hopefully I’ve eased your nerves a bit.
I’ll end this piece by saying that my door’s always open to anyone who wants to talk about this topic, whether you’re a parent of a child with scoliosis, or have the condition yourself. Just send me an email or leave a message in the comment section below.
Also, if you’re the praying type, and can spare a prayer or two for my daughter, I’d certainly appreciate it. Her name is Olivia. Thank you.
Random Thought
Obligatory Dog Shot
Couples counseling.
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Thank you for sharing this John. It's such a scary diagnosis but your detailed way of explaining what to expect and your positive outlook shows parents there is a light at the end of the tunnel. And I just said a prayer for Olivia too.
Thank you for sharing this personal and heartfelt experience. I’ve only followed your punditry and writing fairly recently(both of which you do superbly), so wasn’t aware about your son’s dealings with scoliosis until now. I’m very happy to hear that things have worked out well for him. I will be keeping Olivia in my prayers, as well as you and your family. May God bless, heal, and be with all of you.