Patient Information
Sydney:
Hey, guys.
Speaker 2:
Hey.
Sydney:
Hi.
Speaker 2:
How's it going?
Sydney:
Good, how are you?
Speaker 2:
Are you ready?
Sydney:
I am.
I would say one of the hardest things I've had to go through is ...
Melissa:
Sydney is very, very type A. She's just like her dad and her grandmother, always trying to be a perfectionist in everything she does. She's also fun and she's a very tender-hearted kid.
Dusty:
Sydney in three words, emotional, strong, and I'm going to say fun-loving. It's kind of a hyphenated word, but fun-loving for sure.
Evan:
I would say that Sydney is confident, she's strong. She is one of the best sisters that anybody could have and she has the greatest personality in the world.
Darian:
Yes, Sydney is the sweetest girl you'll ever meet. She takes a lot of things to heart and she really is caring, but she also has a fun personality that makes her just like a little sunshine to be around.
Melissa:
We've lived in Oklahoma City for 18 years now. We graduated from college and moved to Oklahoma City to start our careers. When I found out that I was pregnant with Sydney, Dusty and I, we were so excited. We had a 10-year-old daughter already, she was the only child for a long time.
Then we went to the doctor and she said, "Your blood pressure is a little too high. I think you're going to have this baby." We were like, "Uh, this is almost a month early, three and a half weeks early," and she said, "It's fine." We went in and to the hospital and Sydney was born on July 1st. She was five pounds, four ounces when she was born. They whisked her away, as soon as I had her, they whisked her away. I didn't know what was going on.
She ended up in the NICU for a little over a week. She stayed there and she was jaundiced. When she actually came home, she was four pounds, 11 ounces. She had all the milestones as any other child would, so she grew up just fine.
Dusty:
She was kind of a daddy's girl. Her and I would do stuff together, liked to play.
Melissa:
At her ten-year-old checkup is when we found out that she had scoliosis. Our pediatrician noticed a slight curvature in her spine. He did the bend test, it was 18 degrees. Then by the time we went back six months later to the local children's hospital, we did the wait and see thing, it was 32 degrees. They said that she needs to be braced to that day. That was the first time that we heard about bracing.
Dusty:
I was somewhat familiar, obviously, with scoliosis, because my mother had had scoliosis. Now, she'd had it as a child almost at the same age as Sydney was diagnosed with it. I think being able to share those experiences with Sydney helped. I could tell her that, "Hey, my mom had to do this when she was younger too, and had to go through this experience."
Melissa:
We started looking at other alternatives. We went to Wisconsin to a specialty clinic up there, we went to a yoga master that actually he was trained in India, because at that time it had progressed to 43 degrees and Sydney felt defeated. She cried and it was the first time that she's cried about her scoliosis. It makes me cry even when I think about it because she worked so hard at it. She wore that brace 23 hours a day for two years and never complained. Dusty and I knew that we needed to do something different because we did not really want our daughter at 12 years old to have fusion, and she was looking like she was going to have to have it.
Dusty:
My wife was really the one that started doing a lot of the research, looking on Facebook and trying to find a support group, and she found a group for VBT. I'd never even heard of it before.
Melissa:
I got on there and I just put Sydney story in, like, "This is her age, this is what her curve is." A guy named Kyle, from Oklahoma, he messaged me. He said, "At Shriners you don't have to worry about anything. You just need to go. Local Shriners will help you get there."
I had read that this vertebral body tethering was not FDA approved and so I just tried to research as best that I can. Within a few days I had the x-rays and I had them mailed to Shriners and Dr. Hwang said, "We'd like to see you in person," and so we scheduled our trip to Shriners.
Sydney:
I remember the first time I went to Shriners in Philadelphia. I was nervous, but they just looked at me and just immediately started to care about me and who I was personally, on a personal level that you don't see in very many places.
Dusty:
Dr. Hwang was fantastic. I mean, he answered all my questions, really gave me a sense that the doctor's and the team there, it's not really just the doctors, it's the nursing staff, it's the whole team, everybody, they really know what they're doing, they really take care of the patient. Then there was also a sense that it wasn't just like we were going to go there and be a patient of Shiners for the time of the surgery and then afterwards we go home and we're left on our own. I really got a sense that Sydney would continue to be under the care Shiners for a long period of time and that they were going to continue to monitor her care and her wellbeing over her lifetime.
Melissa:
Dr. Hwang said she was a candidate. He said, "You can do it or not, it's up to you. She can continue bracing, but she's a perfect candidate at this time." We went ahead and did the preliminary test that they wanted. Shriners was leading the charge. We knew they were the best of the best. We weren't as concerned about the FDA approval, but we knew that they were leading the charge and that they had done several of these and we had seen results from other kids.
Steven W. Hwang:
Essentially, with scoliosis, it's basically a curvature of the spine. You have a rotation component. What we see on the x-rays and what families often see is this curve on the x-ray of the spine. Ultimately, we want to straighten the spine so it doesn't get worse and then provide the best correction we can to children. With the VBT, the vertebral body tether, the theory is that you can actually correct the scoliosis and use their growth to help improve the correction. What we tend to do is, through the chest cavity, we make smaller incisions and put a screw into the vertebral body, which is the bigger part of the spine, and put an anchor that tethers kind of a rope that has a little bit of tension on it. That allows us to apply a force on one side of the spine, so we compress one side and then the other side can differentially grow. It slows down growth a little bit on one side, allowing the child's growth to help correct the curve over time as well.
Ideally, hypothetically, we think that'll preserve motion, hopefully distribute the stress of the spine so not any single level has more stress, and maybe long-term avoid more issues with degeneration and pain. With the scoliosis, say, for example, with the curvature of the spine, it affects the pulmonary function and in severe cases can affect other organ structures, and so really we want to maintain as straight a spine as we can and allow for growth and respiratory and lung development. It's a unique environment. I think for the VBT, that's a perfect example where there's very few places that you would ever be able to develop this and pioneer this technology and advance it the way that Dr. [inaudible 00:08:44] and the group here did. Here, really their focus was on the children, that partnership, and that's the way this whole technology came about. It was pretty amazing.
Dusty:
We were in the prep room with Sydney. It's a surreal moment. We held Sydney's hand, I think we were all being brave for each other, and then they wheel her off and closed the doors. I think my wife and I, it was just an emotional release.
Sydney hasn't worn a brace since that. She's able to do everything physically that she wants to do. She had a very good experience with her surgery, there were no complications or no issues. Her recovery was way better than what I was expecting, in terms of her speed of recovery. I think a lot of that is due in part to the surgery itself. I mean, the procedure that the doctors have come up with for this vertebral body tethering is really incredible.
Sydney:
When you play oboe, you have to use a lot of air. It is such a tiny instrument, but each note is so different and it sounds completely different. You have to use all your lungs, all the air in your lungs.
Melissa:
She had her surgery in February and she went back to school six weeks later, but she was playing her oboe, practicing, within three to four weeks. She even came to me and she was like, "I can breathe." She didn't notice that she couldn't breathe fully. Now, she can breathe fully.
Dusty:
I love that my kids are in music now. Evan plays guitar, and he's also in percussion in seventh grade in the band. Sydney, of course, is in the band and she plays oboe and the saxophone. We've got a lot of musical influence our family.
Mr. Mewhorter:
She is a fabulous oboe player, but not only that, she has to double on a marching band instrument as well in the fall, on saxophone. She actually doubles in the fall semester when we run around the field. She's a fabulous both a player, human being for that matter, and just a really talented musician.
Mr. Clifton:
She's an incredible role model. She works with other kids very well, like you asked a while ago. It would be nice to have 50 of her. I would be very happy with 50 of Sydneys. That would be awesome, it really would. She's an awesome child.
Sydney:
Band is my favorite subject because it's something that I get to do with my friends and I get to involve my family in. I learned how to be more outgoing and to problem solve. I know it sounds weird to say that about band, but band really is every subject in one. My brother and my dad, they love to play drums and guitar together. I'll go in there sometimes my saxophone and just play whatever I feel like is fitting. It's really cool because afterwards, after you're done playing, you're just like, "That was cool," that we were all able to come together and to make music. Again, it's really special to me, just because of the emotion behind it and how meaningful it is for people.
Quinton Rav:
When I think of Sydney, I would describe her as compassionate. She is a natural leader and I see that play out in the youth group.
Sydney:
During my surgery, my church group was so supportive. My pastor, he would come to me and he was like, "If there's anything that I can do for you, just let me know." I felt like I could really open up to him and tell him my fears and worries.
Melissa:
I wanted to shout to the world about the care that we received at Shriners, so we found Curvy Girls and we support over 30 members now, we have over 30 members in our group. We run two groups, one in Tulsa and one in Oklahoma City.
Sydney:
My support group has helped me as a person in so many incredible ways. I am a lot more confident in myself and I've learned how to be a good listener. I have a best friend, her name is Katie. She actually lives right across the street from me, we've been best friends since second grade. Over the years, it's gotten to be a very, very strong friendship.
Katie:
I would definitely say she's an inspiration to me because she's had to deal with so much in her life, of just all the struggles of getting through scoliosis, and throughout the whole experience she's been positive, she's been looking forward and she's had a good attitude about everything.
Darian:
She'd be a great national patient ambassador, because like I said, she is very giving, very kind, she cares about others. She wears her heart on her sleeve, she's very emotional. You can see just how willing to help others that she is.
Evan:
I'll call her the best sister of all time, just because she's just been there for me. She helped me out in situations I didn't know how to get out of, she helped me with school work, she's just always been there for me.
Melissa:
She surprises me a lot, Sydney does, how kind she is to other people. When kids are teenagers, they're not always so kind, but Sydney, she takes that person in. Then the support that she gives to the girls in the scoliosis group, I mean, she does that outside of just the one time we meet a month.
Dusty:
I'm proud of her in a lot of different ways. I'm proud of her because she's strong. I can see that she's a lot stronger than she thinks she is sometimes, but she does push herself. She has incredible work ethic, and I see that in how she does her schoolwork.
Sydney:
The hardest that I had to go through mentally was scoliosis. Again, it was hard because I just felt so alone and confused. Obviously, you're like, "Why does this happen? How did this even happen? Did I do something wrong?" I put a lot of guilt on myself. I was disappointed in myself, I felt like I didn't do enough. Going through that disappointment and learning that none of that was my fault and I did my best, working through that was probably the most difficult part of my journey.
I think Shriners Hospital care is unique because I just don't think they realize what an impact they've made on my life. They've given me the opportunity to move on from my journey. All the things I've learned and all the hardships, I can take that now and help someone else. I get the opportunity to say, "Okay, that chapter in my life is done. What can I do now to help others that are going through the same thing that I went through?" I know how lonely that was and so I never want anyone to feel that way.
I'm so thankful that I have scoliosis, because my family is closer than ever and I have amazing friends that are always there to support me. When I get older, I want people to know me as someone who always looked on the positive side and was always there to put a smile on someone's face, no matter how I felt or how bad my day was and just not letting that reflect on other people, just letting them know that everything's going to be okay and there's always a positive outcome of something, even if it's hard.
(silence).
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.