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Reaching New Heights: Seth's Story

Reaching New Heights: Seth's Story

Seth was 11 when his doctor noticed a curvature in his spine. They began with a “wait and see” approach, and later treatment from a chiropractor. Still, the curvature of his spine quickly progressed to a severe degree. He and his family learned about Shriners Hospitals for Children from a social media group focused on the Vertebral Body Tethering (VBT) treatment for scoliosis. Seth, now 17, enjoys playing many sports, including football, baseball and basketball, and is now focusing on competitive golf. Meet Seth and learn more about his scoliosis journey and care at Shriners Hospitals for Children.
View Transcript

Seth:

Hey guys. Ready.

Speaker 2:

Let's roll.

Seth:

It was really scary to me. I was thinking ...

Don:

My wife, Vicki, and I have three boys, Jacob, who's 26, Nathan, who is 25, and Seth is 17. If I had to describe Seth in three words, I think he's thoughtful, I think he's funny, and he's awesome.

Vicki:

He's unique in that he's a very hard worker, he's very driven, he's very fun to be with.

Nathan:

Seth, in my eyes, is a very humble individual. He has a confidence that he can figure things out for himself, and I really admire that about him.

Jake:

He's got a good social life, his grades are doing great and he's working hard at his sport.

Don:

Fort Wayne is a small city in northeastern Indiana with a population of probably 300,000, but in the outskirts, and Vicki and I have lived our whole lives here.

Vicki:

We were high school sweethearts, got married, and four years later, started a family.

Don:

From the time he was born, Seth was never really a complainer. He never asked for anything, he was just easy laid back. He's always been that way, even now as a young teenager.

Vicki:

He had his sports physical in the summer and the doctor noticed that he had some curvature, had some rotation in his spine. He just commented that this is something we just need to keep an eye on. I didn't think anything of it, no one in our family has scoliosis, so just put it on the back burner and didn't think about it.

Don:

Then it was probably some time, a year or so later, when we noticed him walking around the house without a shirt on, that something didn't look right, the curvature of his back, the shoulder blade being distorted. At that point, we had a family friend of ours who was a chiropractor, and we took Seth to see her and take a look at it.

Vicki:

She took us right away into her office and took an x-ray. I think at that time, he might've been in the low 30s, his degree, it's a thoracic curve only, and we began treatments with her.

Seth:

It was very painful and my rotation, flexibility, weren't very good at all. It got to the point where I would sit out some recesses because of back pain because I just couldn't do it, couldn't go out there and play with my friends, which was really hard on me. I was doing exercises that my chiropractor was recommending for me, which did seem to slow down my curvature's growth, but it ultimately wasn't going to stop it. It seemed that there was only one way to help me, and that was through surgery.

Vicki:

She had referred us to another set of doctors, and then we had made an appointment with them. It was through that set of doctors that we learned of a Facebook group that was a support for parents with children with scoliosis. Then it was through this Facebook group that we learned about Shriners.

Don:

But we always had a fear of how is this going to affect his life, his development, how's he going to be able to participate in the youth sports that he so much loved to do. Not only that, but just his growth as a young child.

Vicki:

We had heard that Shriners had a guideline, they had parameters that the child had to meet for them to do the surgery because they were involved with the FDA and this study. We were hopeful that Seth could meet those parameters, we thought that he did fit into that window. The more we read about VBT, we saw that this was the solution for Seth. It was the only solution that we could get behind. This is a non-invasive surgery, it was not the fusion that everyone had talked about in the past as a solution for scoliosis.

Joshua Pahys:

Scoliosis is an abnormal curvature of the spine. There's a number of reasons it can arise, from the congenital, which is you may have abnormal bones or the bones may be stuck together that causes that curvature, or there's some sort of neurologic issue in the spinal cord that can cause it. The most common that we see as the idiopathic scoliosis in the adolescent population, where it's diagnosed above the age of 10. The majority of those patients are actually females, it's about an 8:1 female to male ratio that we see. We still don't know why, which is interesting after all the studies we've been doing. We still call it idiopathic scoliosis, meaning we still don't know exactly what the etiology is. For whatever reason, we think the anterior front aspect of the spine starts to grow a little bit faster than the back and then the curve of the spine starts to curve and rotate. It can go at varying paces and all depends on how fast the child is growing.

We did a lot of the pioneer work here, and it really landed on something called vertebral body tethering. What it is, it's a growth modulation procedure. We're trying to harness the remaining growth of the child, which can negatively impact them because the more they grow, the bigger the curve gets, so can we reverse that and actually turn it in the other direction? What growth modulation procedure does it tries to compress the growth plates asymmetrically. If you squeeze the growth plates on one side, that will slow down the growth, and if you relieve pressure on the inside of that curve, or the concave portion, that growth plate will theoretically grow faster or asymmetrically compared to the contralateral side.

A nice part about it is you're not actually fusing the vertebrae, you're allowing the vertebrae to continue to move. The screws that are placed into the spine and the front of the chest through these small little ports on the side that's done all via thoracoscopic cameras does not fuse the bones together. They're connected by a flexible cord, so that will allow those motion segments to be preserved. That, we think, will have better implications over the long-term.

Don:

From the moment that we first arrived at Shriners, the greeting at the front desk was very welcoming. From that point on, we felt very comfortable in putting Seth in the hands of the people from Shriners. From the nurses to the doctors, even the guys that run the parking garage, it was an overwhelming feeling of just love and support for the kids.

Vicki:

Dr. Pahys took the time to really talk to Seth and find out what his activities were and what was best for. The attitude was just a lot more towards Seth's needs versus what the medical doctors could achieve. We were really happy with what Shriners had to offer.

Seth:

It was scary, but being with Dr. Pahys and his staff, I felt a little more comfortable. You can definitely tell that they know what they're doing and they're experts in their field. I felt very comfortable being with them, so that gave me a little more assurance that my outcome was going to be good.

Vicki:

When it was over, Dr. Pahys came out and he had some x-rays for us to keep and showed us the progress that Seth had. To see the change, he had x-rays from before and x-rays after, but we were so thankful that he had that opportunity.

Joshua Pahys:

Now, he did very well after surgery, I remember. He was one of the ones that just kind of got up, got moving, and couldn't be bothered by all the complaints that most folks have. He just had his eyes forward and was ready to go and let's get up, let's get walking. He did that more and more each day and then he was gone, he was out of the hospital in no time. We were just really, really impressed at how resilient he was.

Don:

At home, down in our basement, we measured him and marked it on a two-by-four and dated it, where he was at. A week later, when we came home, we did it again, and he had grown an inch just coming out of surgery. He was pretty excited about that.

Now, after VBT, he can do anything he wants. It's fantastic. When we watch him play golf now, there's no restriction in movement. He can swing a golf club and do anything that he wants to do with it. He can do anything else, he works out. Because of Shriners Hospital, makes that all possible. I'm forever thankful for that.

Seth:

After my surgery, since I couldn't play football, my options were a little bit more limited, I went to golf. I like the mental challenge of it. It's very easy to get in your head. I want to play in the state tournament this year, do very well there and then make my way up to the D1 golf level. Hopefully, that will help me propel myself to the professional level and play either on mini tours or maybe as an instructor.

Jake:

When he wants to read these books, the motivational self-improvement books, and I think he's taken a lot of that in the heart. Once those books were recommended, he acted like a sponge, from everything he heard from college golf coaches in pursuit of his college golf career. I think he's really taken a lot of those lessons to heart, and he's even applied some of that to other things, where he's trying to learn about random stock exchanges.

BJ Sutherland:

Definitely can see him being a collegiate player. His honing of his craft over the last two years, just to be more consistent. He's a great student, which is going to open up his possibilities for what type of school he would want to be in. Great grades, great character kid, he's a great leader on our team.

Seth:

Religion is very important in my life. Between going to church and going to youth group, I can find all that there. It's very nice to have a little time to hang out with my friends too, maybe play some ping pong or we golf, or just board games. It's very fun.

Nate Bienz:

Out of all of the youth that we have, he's probably one of the ones who was more mature. I've never seen him be anything but courteous and considerate when dealing with other people. Yeah, just a very fine young man that we're very happy to have here.

Joshua Pahys:

His maturity and just his positive attitude I think is infectious. I think that's something that has, again, really stuck with me. When we met Seth and then we've been able to follow him, each time in the clinics when we see him, I would just get a high five from him. He's always smiling, he's always happy, he's always got a great attitude about things. Then again, his willingness to help other patients, I think again has been just so helpful for us and for other patients.

Nathan:

I think he has a natural born leadership quality to him and that's what makes him such a great fit to be in this position. He displays a level of confidence, caring and just an energy about him that I think others also around him admire and look up to.

Jake:

I would just want his legacy to be you can do anything you'll put your mind to and that you can work hard and make those goals become a reality if you're dedicated to it, and even some circumstances that could be discouraging, you can turn them around and really work them to your benefit, just as maybe you had a little setback there but I think that it can just be something to add fuel to your fire.

Vicki:

I think his attitude, he's always had a pleasant disposition. I think happiness is something he'll always have. However he measures it, I hope that he will always have that health, happiness, success in his life.

Don:

Mostly is that I'm just proud of him. I'm proud of the way he's handled the challenges that he's faced, I'm proud of the young man he's turned out to be, and I've just enjoyed being his dad.

Seth:

It was really scary to me. I was thinking that maybe this was going to be a huge, big surgery, very scary, long recovery, and maybe I won't even get back to being half as athletic or what I could be, but I'm glad to see that now I can do all the things that I feel like I would be able to do without scoliosis.

Shriners has given me a lot. Without them, I couldn't do half the things that I can do today. I feel that there's just no way that I can give back enough, but this is a start. I want to be remembered as a hardworking person who could get along with a lot of different people, but also as a guy who was very strong in his faith and did a lot of good works for people and for himself.