Transforming Lives: Lady Debby Bailey's Program

Debby Bailey:

Everyone connected with Shriners Hospitals for Children knows about its quality, compassionate care that changes lives.

We are about to celebrate our hundredth year of providing specialized medical care for kids, and I am proud and honored to support this organization.

I've been interested in working with children with special needs for most of my life. When I was 10, I met five blind students at my new school. A six-year-old, Mark, was asked by his teacher to write his alphabet in braille, on his braille writer. His enthusiasm sparked a lifelong interest for me.

When I met my husband, Bill, whose family was deeply involved in Shriners International, and Shriners Hospitals for Children, I was introduced to another world of children with special medical needs.

Shriners Hospitals for Children is known for providing care both for conditions that are very rare, and others that are quite common. Through my years being connected with Shriners Hospitals for Children, I became increasingly interested in our healthcare systems expertise in treating scoliosis.

Did you know, 2-3% of adolescents are affected by scoliosis? It's a very common condition with a range of treatment options including innovations that were developed right here by our own doctors at Shriners Hospitals. In my program, Transforming Lives, I want to highlight the ways that Shriners Hospitals helps kids realize their potential, especially our patients who have scoliosis.

Sometimes scoliosis doesn't need to be treated. In that case, our specialists opt to observe the child's progress, watching for change, and only intervening if necessary. For some children, bracing and casting can help correct a curvature of the spine. Some patients have curvatures that require more intensive intervention, such as halo traction, spinal fusion, or a new surgical procedure developed right here at Shriners Hospitals called vertebral body tethering.

Dr. Michelle Welborn is a pediatric orthopedic spine surgeon at our Portland hospital. She loves our mission of helping children and working with families. She's also dedicated to doing research and helping to increase medical knowledge.

Michelle Welborn:

So, scoliosis is a three-dimensional curve of the spine that's over 10 degrees. This affects up to 6% of the population. The majority of this, about 2-3% of the total population, is affected by idiopathic scoliosis, which typically occurs over the age of 10. But, girls are eight times more likely than boys to require treatment. Bracing is a way that we can help to prevent progression of scoliosis. This is something that essentially harnesses the power of growth, and helps to minimize curves from getting worse. This is something that we employ in patients with curves over 20 degrees that are at very high risk of progression, and over 25 degrees in the majority of patients. There's multiple forms of bracing, and based upon the type there's varying levels of efficacy. But in general, roughly 85% of young ladies that wear this over 18 to 20 hours of the day, will not have their curves progressed more than about five degrees.

Debby Bailey:

Gabby is a patient at our Twin Cities location. She travels there from her home in North Dakota for her scoliosis treatment. At the Twin Cities Clinic, our medical team created a custom treatment plan for Gabby that utilized bracing techniques.

Gabby:

My name is Gabby, I'm 14 years old. I just turned 14. I used to be in gymnastics for 10 years, and I just recently quit and now I'm volleyball, and I really love it. I'm having a blast doing it.

Matt:

It was July 2018, we were in Daytona Beach, and then we noticed that her shoulder blades appeared to be uneven. So, knowing that we had an app, we quickly downloaded the spine screen app, ran the test, and found out that she was a little bit more crooked than what we wanted to see.

Mandii:

Out of range alert came on-

Matt:

Out of range alert.

Mandii:

And we weren't ready for that one.

Matt:

So we returned back home, and we searched for a specialist in our area. It just dawned on us, why are we looking for somebody in our area when we have access to the best doctors in the world? Doctors that specialized in adolescent scoliosis. So, we made an appointment and next thing you know, we were in the Twin Cities and Gabby a the patient.

Mandii:

We made an appointment with the Shriners, the very first thing we did when they walked in the door is, "Well, let's establish your baseline." And that, after seeing two doctors before, had not been done before.

Our diagnosis, we first have the app in July of 2018, we got into his Shriners, September of 2018. That baseline was set and I'll never forget, because he goes, "Let's do a two month checkup," because Gabby's age was at a point where she was doing some rapid growth. And in that two months, Gabby had jumped over 25 degrees, which would be where bracing would be required. And so, you had your brace January of 2019, that was the first brace. And we've gone through five braces because she has had such growth.

What's so wonderful about Shriners is they educate us, so we know when to start looking for things. Part of that was correcture, and part of it was just growth.

Gabby:

Yeah. I started at 4'11, and I remember in the first few months when I hit five foot, I was so excited.

Mandii:

What's been fun is Gabby has been part of the SSE programs through Shiners, so that's Specialized Scoliosis Exercises, and what that gives us is the opportunity to get down and work with a PT specialist once a month.

Gabby:

Obviously, as my dad being a Shriner, I grew up around the hospital, I knew how everything worked. When I first went in as a patient, I was blown away because it doesn't feel like a hospital when you walk. They're arms open, ready for a hug, and it's very welcoming.

Matt:

We've always known it as a home from a Shriner perspective, we never knew it from a patient perspective. So, it's gratifying to see that what we do every day, it's not just talk on one side, it actually is that comforting when you get in as a patient, and Gabby story is really a testament to early detection. And so, that's where the app, as simple as it is, can be impactful because in this day and age, everybody's got a phone. We've been religious about it, and you've done a good job.

Debby Bailey:

While some scoliosis patients are diagnosed as tweens or teens, others start their medical journey much earlier. Amy, the mother of one of our national patient ambassadors, first noticed her daughter's spine wasn't straight when Mia was about three months old. After a series of treatments including bracing and halo traction, Mia had a spinal fusion surgery at St. Louis Shriner's Hospitals when she was 13.

Amy:

She's just beautiful, she's straight. You don't even see it. It's amazing what they did as a hospital, what they did as a medical team. Her success is directly related to Shriners, for sure.

Michael Kelly:

Mia ran the gamut of spine interventions for her scoliosis from a bracing, to her growing construct, to her definitive fusion. I would say from a purely medical perspective, it's a success story because the institution of care very early in distraction rods by one of my predecessors, Larry Lenke, gave her, when we converted her to a fusion, a nearly straight spine. Almost perfectly straight, perfect alignment.

Mia:

I don't think I'd be as happy of a person if I wasn't with Shriners. I think I would be missing a huge chunk of my life.

Debby Bailey:

Shriners Hospitals is a place that offers very innovative treatments. Vertebral Body Tethering, or VBT, is an option that was actually developed by our Shriners Hospitals doctors in Philadelphia. VBT was pioneered by Dr. Amir Samdani, the Chief Surgeon at our Philadelphia Shriners Hospital location.

Dr. Amir Samdani:

So the way that tethering works is if you look at a curvature of the spine, what's happening is when you have a curve on the spine one side, i.e., this side is longer, this side is shorter, this side is growing faster than the shorter side. The way that we compress that is we place screws into the vertebral bodies, we put a tether that allows motion, and as the child grows, the convex side that's longer to begin with doesn't grow. The concave side that is shorter grows, and the curvature corrects. The way the procedure is performed, we're able to do a thoracoscopically, meaning we're able to do it through a very minimally invasive approach.

When I had started at the Shriners Hospitals, we had a strong interest in growth modulation. Dr. Randall Betts, who's a mentor of mine, played a big role in really saying, "Listen, we have to give patients options, and can we take a child's growth and utilize that growth to correct scoliosis?" And that was a big focus of ours in 2005 to 2010. So if you're doing well with bracing, you don't need incisions, then obviously you're going to brace someone. But we had a whole spectrum of patients that had curves greater than 35, that were still growing and they needed an option. After doing a lot of research we said, "Listen, we want to continue to push the field forward and give patients options."

Debby Bailey:

Sidney and Seth are two patients who had VBT surgery at Shriners Hospitals for children, Philadelphia. While most people tend to think just about the spine when they think about scoliosis, the condition can affect a child's heart and lungs. This was a concern for Sidney, who is a musician that loves to play wind instruments like oboe and saxophone.

Seth was nervous that surgery for scoliosis would affect his ability to play golf. But his doctors say that his hard work and positive attitude helped him to recover quickly. Now, Seth is back to enjoy the sport he loves, competing with others his age, and preparing for a future in finance, or even as a professional golfer.

Many of our patients, especially those with scoliosis, need lots of images taken throughout their treatment. That's why we try to limit exposure to radiation as much as possible. The EOS imaging system emits much less radiation than standard x-rays or CT scans. EOS systems produce high quality 2D or 3D images that deliver very precise measurements, helping our medical teams to craft in-depth analysis and personalized treatment plans.

The life-changing care that our teams provide every day at Shriners Hospitals for children is so inspiring to me. Every day, kids are encouraged to live life to their fullest potential. I've told you about a few, but there are so many more. It is such a privilege for me to be a part of the effort to help improve the lives of children. You can help, too.

Please support us and transforming lives of Shriners Hospitals for Children by purchasing a tie, socks, a special hundredth anniversary Christmas ornament, or a beautiful piece of jewelry. Donations to transforming lives may also be made online. Your generosity will help give our patients every possible advantage on their journey to create full, satisfying, and productive lives. On behalf of all of our inspiring patients and their families, I sincerely thank you.