Santiago Braves Limb Reconstruction Like a Comic Book Hero

Santiago Braves Limb Reconstruction Like a Comic Book Hero

Cover story previously published in Rite Up, 2024 – Issue 1.

by Kristi Shewmaker

Santiago is an artist, creator and prop maker. An eighth grader from Josephine, he became an artist at a young age when his older brother Esteban inspired him to draw. Later, his parents, Alejandro and Maricela, surprised him with a desk and art supplies, which he fashioned into an art studio in his room. Over time, Santiago’s work has evolved from creating 2D to 3D art forms beginning with origami, which he used to begin making props based on movies.

“Drawing a character is fun, but being that character is really special,” Santiago says. A fan of Marvel Comics® and various movies, Santiago has created wearable props including the Batman® Cowl, Iron Man® Arc Reactor and Daredevil® helmet, which was signed by Daredevil film actor Charlie Cox. Santiago’s prop making mediums have advanced from using paper to cardboard to foam to 3D printing, and now, he is trying his hand at metal.

Through his school, Santiago has received multiple accolades for his art. In seventh grade, he won the regional University Interscholastic League (UIL) visual arts competition for his 3D miniature theme park based on Ant-Man®. The year before, at his sixth grade end-of-the-year awards ceremony, his school named him Artist of the Year. It was a significant award to the whole family because just a few months before, they had experienced the unimaginable.
 
On a usually empty road near Santiago’s home, it was dusk when a car took a wide turn and veered into the wrong lane toward him. Riding his dirt bike, Santiago swerved, but a mailbox was in the way, and the car struck him causing a severe traumatic injury to his left side.
 
“I was shocked,” Santiago says. “I didn’t feel anything, but I had an idea of what happened, and I didn’t want to look down.” The neighbor called 9-1-1. Then, Esteban arrived. “I felt bad for my brother,” Santiago says. “He saw everything.” While lying on the driveway, Santiago asked Esteban if his dirt bike was OK. “I tried to make a joke to brighten the mood, to bring a little light into this dark situation,” he says.
 
Santiago was taken by helicopter to Children’s Medical Center Dallas, where he underwent numerous surgeries. “We couldn’t believe this was happening,” Maricela says. “We have never had anybody in our family go through an accident like this.” After receiving initial treatment for his injury, Santiago was referred to Scottish Rite for Children under the care of pediatric orthopedic surgeon David A. Podeszwa, M.D.

“Santiago sustained a very severe leg injury — as bad as they come,” Dr. Podeszwa says. “His femur was shattered. We call it comminuted, meaning it was broken into dozens of pieces. He also had a segmental loss, a large portion of bone in his femur was missing.” The break in his femur also disrupted his knee joint, and his tibia was fractured. Santiago’s leg would need complete reconstruction.

In surgery, Dr. Podeszwa inserted a spacer with antibiotics into Santiago’s femur where the bone was missing. Then, he secured an external fixator onto Santiago’s leg that spanned from the femur across the knee to the tibia to hold everything in place. “With an injury to the bone, there is always a huge soft tissue injury associated with it,” Dr. Podeszwa says. “We needed his soft tissues to heal before we could reconstruct the bone in his leg.”
 
Santiago would continue to receive specialized care through Scottish Rite’s Center for Excellence in Limb Lengthening and Reconstruction (CELLR). Led by CELLR Clinical Director Dr. Podeszwa and CELLR Research Director Mikhail Samchukov, M.D.*, Santiago’s multidisciplinary team of experts also includes CELLR Director of Clinical Implementation and Outcome Studies Alexander Cherkashin, M.D.**, Emily Elerson, R.N., and pediatric psychologist Whitney Herge, Ph.D.
 
For more than 30 years, Drs. Samchukov and Cherkashin have pioneered research and development for limb lengthening and reconstruction techniques at Scottish Rite. Having studied under Gavril Ilizarov, M.D., in Russia, Drs. Samchukov and Cherkashin along with Scottish Rite researchers modified Ilizarov’s original external fixator and developed and patented the TRUE/LOK™ External Fixation System. Scottish Rite’s innovation and continual advancement, in collaboration with Orthofix® Medical Inc., has revolutionized limb lengthening and reconstruction methods through this system that is implemented by surgeons around the world. Santiago was the first patient at Scottish Rite to receive the TrueLok™ EVO, the latest generation in the series of circular external fixators.
 
After four months of healing, Santiago underwent femur reconstruction surgery in which Dr. Podeszwa initiated a technique called bone transport, a procedure that encourages new bone to grow. Because Santiago had lost 3 inches of bone and bone cannot regrow in a gap that large, Dr. Podeszwa cut his femur creating a segment of bone above the gap and a new space where bone could regenerate. Over many months, Santiago turned pins on the outside of his external fixator. The pins were connected to wires inside his leg that pulled the segment of bone down to fill in the gap caused by the injury. As the bone was transported into the gap, new bone grew in the space created above
 
“Of the 8-centimeter gap that he lost initially, we reconstructed a solid 7 centimeters of it,” Dr. Podeszwa says. “He basically grew himself a new 3 inches of thigh bone.”
 
“It was absolutely amazing to us,” Maricela says. “We cannot believe Santiago was able to do that.”
 
Bone transport is an uncommon procedure. “Fortunately, at Scottish Rite for Children, we not only have the support of the institution to manage very complex, labor-intensive treatment but also a team that is highly specialized and can help kids who suffer from complicated injuries or conditions,” Dr. Podeszwa says.
 
After a few more surgeries and a lot of healing, Dr. Podeszwa removed Santiago’s external fixator in August of 2023. Now, Santiago wears a knee-anklefoot-orthosis, a brace designed to improve mobility, increase bone and muscle strength, and enhance independence.

“Because of the magnitude of his injury and the damage to his knee and thigh muscle, Santiago will require rehabilitation to recover his knee motion and strengthen his quad,” Dr. Podeszwa says.
 
At Scottish Rite for Children Orthopedic and Sports Medicine Center in Frisco, Santiago undergoes weekly physical therapy, rotating between land and aquatic therapy. He works on endurance in the AlterG® AntiGravity Treadmill,™ which uses technology originally developed for NASA astronauts. It allows him to walk with less weight on his muscles, joints and bones as he builds strength. In the HydroWorx® therapy pool, Santiago works on mobility, knee range of motion and strengthening. “Santiago has exceeded our early expectations regarding rehab,” Dr. Podeszwa says, “and we look forward to seeing continued improvement over the next six to 12 months.”

Santiago has endured a long, difficult journey since the injury, but he says that now, he feels more relaxed, more free. “In my opinion, the hard part is over,” he says.
 
Maricela is happy to see Santiago progress. “I think God specifically put Dr. Podeszwa in our lives and now, slowly, we can see that Santiago is going to be OK. He has the best doctors working with him, and that’s a blessing. We’ve learned to accept what’s going on and enjoy the fact that he’s here.”
 
According to Dr. Podeszwa, Santiago is a role model for kids who go through this type of complex treatment after a traumatic injury. “It’s amazing what adversity can do,” Dr. Podeszwa says. “Some people champion it. Others are wrecked by it. Fortunately, Santiago has championed it. He has an incredible artistic mind and has put his energy into maintaining his academic and personal growth in spite of all that he’s been through. It’s been impressive to see.”
 
“Scottish Rite is a symbol of hope,” Santiago says. “I’ve learned that I can be strong when it comes to most things going on around me and with me, and I can find light in every dark place.”

Read the full issue.

Share Your Story: Chief Growing Officer

Share Your Story: Chief Growing Officer

It’s Limb Loss and Limb Difference Awareness Month, and we want to highlight our patient Isa, who also happens to be the 2022 Gerber baby! Learn more about her journey below.

Blog written by Isa’a parents, John and Meredith. 

What prompted seeking medical attention?
During our 20-week ultrasound, we learned that Isa would be born with a limb difference. We began educating ourselves on the resources available, and when she was born, we met with our local children’s hospital to discuss initial treatment options. We were fortunate to be able to seek out further treatment recommendations from experts in lower limb differences.

How did you learn about the Scottish Rite for Children?
During our initial consultation at our local children’s hospital, they directed us to Scottish Rite and assured us that the providers who would care for her are truly experts in their field. After looking online and reading about treatment options available and testimonials from children and families, we asked to schedule an initial appointment. 

Can you describe Isa’s treatment journey?
We first met Dr. Tony Herring and Dr. David Podeszwa on May 24, 2022. This was an incredible visit and ultimately what helped us to decide that Scottish Rite was where we wanted Isa to get her care. 

Both Dr. Podeszwa’s and Dr. Herring’s teams met with us together. They noted that this doesn’t typically happen, but they wanted us to be able to meet with both teams on the same day. Everyone present was so kind. Dr. Podeszwa started by reviewing Isa’s images (previous MRI from another facility) and discussing treatment options as she got older. Dr. Herring followed and discussed the amputation process for her right foot. He showed videos of children with similar limb differences doing things like walking, running and even slam-dunking a basketball! Seeing these videos and hearing about the successes of other children with similar conditions helped us to feel more confident in the treatment plan for her.

One of the unique opportunities that Scottish Rite provides is peer support. We were matched with another child and family who had a similar limb difference and had been through the amputation and prosthetic journey. Being able to speak with another child and family, again, helped us to feel confident in the treatment plan and hopeful for all the things Isa will be able to do in the future.

After that, we had an additional follow-up visit with Dr. Herring, and then on January 19, 2023 Isa had a Syme amputation of her right foot. The hospital stay helped to prepare us for taking care of her and setting her up for a successful recovery. We cannot thank our nurses, physical therapists, child life and other support staff enough during our time in the hospital! Isa was so loved by everyone, and we felt the support from everyone around us. The hospital stay was short, and on January 21, we started our journey back to Oklahoma.

After the surgery, we had several contacts with Martha, the nurse who works with Dr. Herring, and with Rosie in Child Life. They were instrumental in helping us with questions that arose post-surgery. It was only a few short weeks and then we were back at Scottish Rite following up with Dr. Herring!

At her appointment on February 13, she was cleared to meet with prosthetics to get the first casting for her prosthetic leg. We met with Director of Prosthetics Don Cummings two separate times before we returned on March 21 for her final fitting and physical therapy. Though the initial sessions of physical therapy were challenging, by the third day, Isa was standing and taking supported steps with her new prosthesis! Brenda H. and her team were amazing at making Isa feel comfortable, so she could take those amazing first steps. Child Life specialist Rosie, also visited with us and gifted Isa a stuffed cat, who has an amputation like hers. We spent three days with Don and Brenda who worked to adjust Isa’s prosthetic to the perfect fit. We are so grateful for the education and guidance they provided us. We even had time for a call to our oldest daughter, Tempe, who told us what color she felt Isa would like for the outside of her prosthesis: purple with sparkles. Don said he would work to make Tempe’s vision come true.

We will be forever grateful for the experiences we have had with the teams at Scottish Rite. This has been and will continue to be an amazing journey. 

How would you describe your overall experience at Scottish Rite?
The experience has been amazing. From our first contact to schedule the appointment with Dr. Herring and Dr. Podeszwa to our most recent visit with Don Cummings and Brenda H., we have always felt that everyone at Scottish Rite is there because they love the work they do each day. Each person you meet greets you with a smile and engages you in conversation. Everyone is helpful and always works to provide resources or direct you to the correct person for your needs. The facility is unlike anything else that we have ever experienced and truly works to give children back their childhood.

What are some things Isa likes to do?
Isa loves ANYTHING that her big sister does. She follows her around and always wants to play. Isa loves to play with Duplos and Fisher-Price® Little People. She loves Sesame Street®, especially Elmo® and Cookie Monster®. She loves being outdoors and going for walks. Isa loves being helpful. She will bring you your shoes if it is time to leave. 

She wants to help brush her teeth, and she puts away her toys when it is time to clean up. She loves to talk to others and show them things. Isa has a large vocabulary already and gains new words every day! Also, she loves to crawl and climb. Once she gets comfortable with her prosthesis, it is going to be hard keeping up with her!

 

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Why I Run: Family Support

Why I Run: Family Support

Meet Preston, a patient who was seen by our team of experts. Learn more about his journey below.BMW Dallas Marathon

Blog written by Preston’s dad, Preston.

Our son Preston lives with a condition known as Klippel-Trenaunay-Weber Syndrome (KTWS). In short, it is a

This image ALT text is: A baby is standing next to a woman on a wooden floor .

 vascular disorder that can cause vascular malformations and affect skin and bone development. The effects vary dramatically between patients. Preston is affected throughout the entire lower half of his body. He has abnormal vein development (an abnormally large number of veins) throughout his abdomen and legs, which can cause internal bleeding, pain, fatigue, etc. As it relates to Scottish Rite for Children, however, is the abnormal development of his right leg. He was born with a significantly small right leg that also has some joint misalignment in the ankle and knee. This leg length discrepancy caused significant issues with walking or climbing stairs, and it virtually eliminated his ability to run or play like other children.  

A baby is standing next to a woman on a wooden floor .

Our journey to Scottish Rite was not immediate. After diagnosis, our initial concern from our doctors here in Houston were the immediate vascular issues. Once we addressed this, we were referred to an orthopedist locally who was the “best” per our referrals. This doctor did not, however, prove to be the best for us and left us desperate to find someone to help. We tried several locally, but none were equipped to manage his orthopedic needs and grasp his KTWS. One of his vascular team doctors recommended Scottish Rite. Up to that point, we were unfamiliar with the hospital.  

As you can imagine, our family has visited many hospitals over the years, and I don’t have to tell you how emotionally challenging it could be for us. I can tell you that the moment we drove into the parking lot at Scottish Rite, we knew it was different. My wife and I were initially confused when we could not locate where to pay for parking, never thinking that we might not have to pay to park. Our whole family was blown away by the difference that can be felt when you are at Scottish Rite. It is the only hospital where we are not anxious or confused. From the moment you walk through the doors, everyone is helpful and happy, also something we rarely see at other hospitals. Preston’s experience with Dr. Podeszwa and his team of doctors at Scottish Rite has been exceptional, and he looks forward to each trip to Dallas for his appointments. We always stop for lunch at his favorite restaurant, Half Shells in Snyder Plaza, while there.  

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After several years of monitoring his legs and getting by with orthotics and knee braces, he underwent an epiphysiodesis surgical procedure to help even out the length of his legs. Dr. Podeszwa and his team performed the surgery in November of 2020. We have seen a significant decrease in the leg discrepancy over the last year and a half. This has allowed him to participate in sports, with baseball being his favorite. While he may not set any records as the fastest on his team or be the most graceful, he can now run the bases on his own without the need of assistance or a pinch runner. This has had a dramatic effect on his self-confidence and our peace of mind. While he will live with KTWS his entire life, the reduction of his limb discrepancy will help him get closer to a typical lifestyle.  

Preston and I have discussed, at length, getting further involved with Scottish Rite. We decided this year would be a good time to get involved. I would typically run the NYC Marathon in November or the Houston Marathon in January, but we thought running in Dallas would be a great experience for the whole family and help him give back to Scottish Rite. Preston has been joining me as I train for the marathon – he bikes while I run. While he isn’t ready to run a marathon yet, Preston is excited to serve as one of the Junior Race Directors for the 2022 BMW Dallas Marathon. Our whole family is excited to give back, and we are thankful to have the opportunity to play a small part in helping Scottish Rite continue its ability to help all children.  

A man is running and a boy is riding a bike

Since 1997, Scottish Rite for Children has been the primary beneficiary of the BMW Dallas Marathon. This weekend, spectators will line the streets and neighborhoods of Dallas to cheer on participants. Learn more about registering for the BMW Dallas Marathon and how to the support runners.

Learn more about our Center for Excellence in Limb Lengthening

Overcoming Hardship with Humor and Hope

Overcoming Hardship with Humor and Hope

Article previously published in Rite Up, 2022 – Issue 3.

“Why do nurses like red crayons?” says 17-year-old Mikaylin, of Forney. She pauses. “Sometimes, they have to draw blood.”

Exchanging dad jokes, eye rolls and laughs with pediatric orthopedic surgeon David A. Podeszwa, M.D., became a tradition after Mikaylin came to Scottish Rite for Children in the spring of 2021. She has looked forward to every appointment since.

Before finding Scottish Rite, Mikaylin endured years of extensive treatments and setbacks that left her and her mother, Laneesha, feeling despondent. What began as pain in her legs while playing basketball turned out to be stress fractures. A doctor surgically implanted rods into her legs, but the bone in her right leg became infected. They tried to fight the infection through multiple surgeries without success. Finally, the doctor said that she needed to consider amputation.

“I was at a point where I was like, ‘I just want to get this over with. Just take the leg away from me,’” Mikaylin says. Laneesha researched other options and consulted with another physician who referred Mikaylin to Scottish Rite. “When we arrived, Mikaylin was really down,” Laneesha says. “But after our first visit, her outlook completely changed because they gave her hope.”

Experts from Scottish Rite’s Center for Excellence in Limb Lengthening and Reconstruction (CELLR) designed a customized treatment plan to save Mikaylin’s leg. Dr. Podeszwa and a team of specialists surgically removed more than four inches of infected bone from her leg and attached the TRUE/LOK™ External Fixation System, a device that would support the reconstruction of her bone throughout the next year.

“The day after surgery, Mikaylin got out of bed and put weight on her leg for the first time in 18 months,” says Emily Elerson, R.N. “When I saw the look in her eyes, I knew that was the turning point for her.”

Next, the team conducted a bone transport — a procedure to grow new bone where the infected bone was removed. To facilitate this surgery for Mikaylin’s specific case, new equipment was invented and attached to the fixator. “Mikaylin will be remembered long after we’re gone,” Dr. Podeszwa says, “because of the complexity of her treatment and how resilient she was with postoperative rehabilitation.”

In August, Dr. Podeszwa removed the fixator from Mikaylin’s leg. For a month, Mikaylin was on crutches, but at her next appointment, she received the big news — she could finally walk on her own. “We talk about how sad we’ll be when we don’t get to come to Scottish Rite anymore,” Laneesha says. “Mikaylin loves everybody there. They’ve become a huge part of her life.”

“I’m going to miss them a lot,” Mikaylin says. She hopes to keep in touch and possibly volunteer one day. When asked what she most looks forward to doing after recovery, Mikaylin says — without missing a beat — “shave my legs!” Laneesha laughs and says, “And, she can’t wait to wear pants.”

Read the full issue.

World-Renowned Hip Care

World-Renowned Hip Care

Scottish Rite for Children’s Center for Excellence in Hip has a long tradition of providing the highest-quality medical care to thousands of children, from newborns to adolescents and young adults. Led by director and pediatric orthopedic surgeon Harry Kim, M.D., M.S., the team provides a coordinated and comprehensive approach to care that brings together hip specialists from orthopedics, radiology, physical therapy, psychology and more. This multidisciplinary team approach allows us to offer a broad spectrum of operative and nonoperative care options to preserve, improve and repair the native hip joint. At the Forefront of Innovation  Our experts are committed to advancing clinically important research to provide the best care to our patients. Several of the center’s research projects have led to revolutionary, life-changing results. Patients who had evaluation and treatment at our center have the opportunity to participate in large patient registries to allow for evaluation of treatment outcomes for a variety of conditions. These studies lead to new insight and significant improvement as our team modifies treatment algorithms based on these results. In addition, doctors and researchers are involved in multicenter hip research groups with peers at top-tier institutions around the country. They regularly collaborate to discuss the latest innovations and treatment techniques regarding patients diagnosed with pediatric hip conditions and injuries. Movement Science Laboratory The accredited movement science laboratory is an integral part of the treatment of our patients. The multidisciplinary team of engineers and kinesiologists use leading-edge technology to evaluate and identify joint motion, net joint forces, muscle activity, strength, foot plantar pressures and oxygen consumption. These analyses guide the development of individualized treatment plans for our patients and support research. The clinical research team partners with movement science to study the changes experienced with surgical intervention to ensure each patient continues to maintain improved hip functions. Multidisciplinary Complex Hip Clinic This clinic brings all of our hip experts together in one clinic to review and evaluate each patient in person together. The history, physical examination and images are evaluated, and various options are discussed for treatment. The multidisciplinary approach also includes experts in the fields of physical therapy, psychology, pain management and nursing. A comprehensive diagnostic (if necessary) and treatment plan is then developed specifically for each patient. If surgical treatment is necessary, the full range of procedures are available with the experts in the field to include hip preservation surgery (both open and arthroscopic options) as well as the potential for utilizing total hip arthroplasty (replacement) when appropriate. This clinic occurs every month and only those patients requiring this multidisciplinary approach are included. Patients may request to be seen in this clinic. Hip Team All of our pediatric orthopedic surgeons are board certified in orthopedic surgery and also completed a fellowship in pediatric orthopedics. Several of our medical staff have a particular interest in treating and studying pediatric and adolescent hip conditions. Harry Kim, M.D., M.S. 
  • Special interest in treating patients with Perthes disease, adolescent and young adult avascular necrosis, and developmental dysplasia of the hip (a member of International Hip Dysplasia Institute).
  • Leader and chair of the International Perthes Study Group – multicenter research study focused on advancing the care of children diagnosed with Perthes disease.
  • Extensive basic and clinical research on Perthes disease and avascular necrosis.
Daniel J. Sucato, M.D., M.S. 
  • Special interest in treating adolescent patients with various hip conditions including hip dysplasia, adolescents and young adults with Perthes disease, slipped capital femoral epiphysis and femoroacetabular impingement.
  • A member of the Academic Network of Conservational Hip Outcomes Research (ANCHOR) study. A multi-center project that analyzes hip function and pain, quality of life and other factors on patients who undergo hip preservation surgeries.
Henry B. Ellis, M.D. 
  • Special interest in treating femoral acetabular impingement, labral tears and other sport-related injuries and conditions in the hip.
  • Involved in multi-center research projects with a special interest in hip arthroscopy.
  • A member of the Academic Network of Conservational Hip Outcomes Research (ANCHOR) study.
David A. Podeszwa, M.D. 
  • Special interest in treating patients with hip dysplasia, slipped capital femoral epiphysis and femoroacetabular impingement.
  • A member of the Academic Network of Conservational Hip Outcomes Research (ANCHOR) study.
William Z. Morris, M.D. 
  • Special interest in treating patients with hip dysplasia, slipped capital femoral epiphysis and femoroacetabular impingement.
  • Extensive clinical research in the pediatric and adolescent developing hip with expertise in the pathogenesis of slipped capital femoral epiphysis and femoroacetabular impingement.
Corey S. Gill, M.D. 
  • Special interest in treating infants with hip dysplasia and patients with cerebral palsy with various hip disorders/dysplasia.
  • Other common hip conditions seen include slipped capital femoral epiphysis, Perthes disease, transient synovitis of the hip, osteoid osteoma and proximal femur cysts.
Learn more about the Center for Excellence in Hip.