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).