Dad's Words: Our Shriners Hospital Experience

Father chronicles his daughter’s treatment for scoliosis

Editor's Note: Evan lives in Brownsburg, Indiana, a suburb on the west side of Indianapolis with his wife, Sarah, and their children, Addison (14) and Ryne (12). Addison is being treated at Shriners Hospitals for Children – St. Louis. Evan is a passionate Chicago Cubs fan and operates a blog called Cubs Insider. The popularity of the site has allowed him to make TV and radio appearances throughout the Midwest and helped the success of a fundraiser to benefit the hospital.

There is no instruction manual for parenthood, but even if there was, I don’t think it would have a section on how to react when your child tells you they want to die.

My daughter, Addison, was born with a severe case of scoliosis that degenerated into an “S” with dual 86-degree curves. After 13 years of hoping things would work themselves out naturally, it reached the point that she needed surgery to alleviate constant pain, decreased lung capacity and chronic gastrointestinal issues. But that was just the beginning, or rather, the end.

Addison’s pediatric orthopedic specialist in Indianapolis referred us to Shriners Hospitals for Children – St. Louis, and we made the trip during the summer of 2019, not knowing how soon and to what extent our lives would change. What quickly became obvious to us was that the people at Shriners Hospital really cared. That may sound trite or even redundant when talking about a hospital, but I can assure you this was different.

It was going to have to be, given the length of her stay, which we anxiously scheduled during that very first visit. She was to be admitted that coming October, which felt like the next day instead of a few months out.

Due to the extreme nature of her deformity, Addison had to undergo six weeks of halo gravity traction to prepare her spine for surgical correction. That meant having a halo implanted in her skull via six screws, then hanging an increasing amount of weight to a pulley system attached to the titanium horseshoe. By the time she was ready for surgery in early December, she was at 33 to 35 pounds.

Oh, she also had weight attached while sleeping, though only half of what she carried around when upright. She got a little taller as her spine "unwound," a process that made the subsequent procedures easier and less taxing on her body. However, portions of her spine had fused together and would need to be surgically separated.

The end result was a dual-stage procedure, apparently the first that had been performed at the St. Louis Shriners Hospital, to straighten and strengthen her spinal column. All told, Addison underwent something like 16 hours of surgery – two separate procedures just one week apart – and grew 2 inches or so with the help of two titanium rods and 22 screws.

It was after one of those procedures, swimming in a cloud of pain and anesthesia, that she told us she wanted to die and that she wished she’d never had surgery. She doesn’t remember a second of it, or at least she claims not to, but those moments stretched into months for me and my wife.

Amazingly, Addison was up and walking the day after her second surgery and was discharged two days after that. It wasn't fun or easy by any stretch, and the pain was almost too much for her to bear at times. The worst part was actually her ribs, which were realigned by the surgery, resulting in severe discomfort as all the muscles and cartilage got used to their new positions.

She’ll live with some permanent reminders of her surgeries, scars and a little asymmetry that is to be expected, but other issues have been permanently alleviated. She’s no longer in constant pain, her lung capacity seems to be better, and the GI troubles that resulted in several different daily prescriptions vanished almost immediately. She can even kick herself in the butt with her heels, something that was never possible before. It's incredible.

Just as incredible was our experience with the people who supported us throughout our time at Shriners Hospital. The nurses and therapists could not have been better, and there’s no way we can ever adequately thank the ladies in recreational therapy. Then there were the letters and packages flowing in on a daily basis from friends and strangers alike, many of whom were Cubs fans who knew me from my blog, Cubs Insider.

It was not lost on anyone that this was all happening in Cardinals Country.

Before Addison was admitted, I started a GoFundMe with the goal of raising $1,000 to make Addison’s stay as comfortable as possible. What started out as a way to buy books or games for her room quickly ballooned as our support system flexed its generosity muscles, and we knew we had to find a way to pay as much forward as possible. Between a new iPad for recreational therapy and three specialized walkers for future halo patients, we were able to do something much bigger than initially dreamed.

As we were finalizing the discharge process, we saw a 6-year-old boy who'd just been fitted with his halo. He was the first to use one of the new walkers. Then, when we returned for Addison's first checkup, we met a little girl who was using another of the walkers. Knowing that their time might be made even the slightest bit easier as a result was worth more than any donation we could have made.

While I don’t think anyone in our family would choose to do it over, I can’t imagine what our lives would be like if not for Addison’s time at Shriners Hospital. She’s not only stronger and healthier, but she left a legacy that will impact countless children and families who follow in her footsteps.