Adopted from Colombia two years ago, Miguel’s congenital limb deformity had left him unable to stand or walk, relying on his knees and a wheelchair to navigate the world. “We were aware of his congenital limb deformity, but we weren’t exactly sure what that would mean for him in the course of his life,” his mother, Jennifer, shares.
Life before treatment was a series of adaptations and challenges. Miguel had developed his own way of navigating the world. He would “walk” and crawl on his knees, using custom knee pads to cushion his movements. “He was amazingly active,” Jennifer shares, “but he did have frequent pain and skin issues from ‘walking’ on his knees.” His inability to stand or reach things independently made everyday activities a constant challenge.
His family’s resolve to find a solution grew stronger with each passing day. “Because he also has shortened arms, we realized that this would significantly impact his level of independence for the rest of his life,” Jennifer explains. Their local doctors in Ohio had not offered much encouragement or options for surgical treatment. “We felt like we were hitting a wall,” Jennifer shares. But then an internet search led them to Dr. Shawn Standard through parent testimonials on social media.
The family immediately reached out to Dr. Standard about their son. “He was very confident Miguel could walk independently with surgical treatment,” Jennifer says. When she told Miguel they had found a doctor who could help him walk on his feet, his immediate response was, “Tomorrow?” Jennifer laughed and told him maybe when he was 11. A few weeks later, Miguel asked again, “When I’m a big boy, will I be able to walk on my feet?” Jennifer told him that yes, with the help of Dr. Standard, she believed he could. “It was wonderful to be able to tell him that,” says Jennifer.
The decision to travel to see Dr. Standard for an evaluation was a no-brainer. During their visit, they met a family from Colombia who had also traveled to see Dr. Standard for their son. This encounter was the final piece of the puzzle, confirming that Dr. Standard was the right choice. When Dr. Standard moved to Nemours Children’s Hospital, Florida, the family didn’t hesitate. They quickly decided to follow him to Nemours Children’s, ready to embark on a new path forward with the promise of a brighter future for Miguel.
The journey to correct his bilateral knee contractures was both challenging and rewarding, thanks to the expertise and compassion of the medical team. Within a span of less than a month, Miguel underwent three surgical reconstructions, each one meticulously planned to address the complex issues with his legs. The surgeries were not only about physical correction but also about ensuring Miguel’s comfort and well-being throughout the process.
“We can’t say enough about the personal care we received, especially from Dr. Standard, physical therapist, Emilea Allen,” shares Jennifer. “Dr. Standard quickly responded to all of our concerns and helped us solve issues that arose. We felt very confident during the whole process that we could call on him and that he would have the answers! He was also very good at communicating all that was happening with Miguel in a way that we could understand.”
In addition to the surgical interventions, Miguel’s recovery included dedicated physical therapy sessions led by Emilea. “She was very patient and understood how to best motivate Miguel during therapy,” says Jennifer. “She seemed to put great effort and thought into each therapy session, and we saw positive results every session. She even attended a birthday celebration for Miguel on her own time and gave him a very thoughtful gift on his last day of therapy with her.”
The International Limb Correction Center team, led by Drs. Standard and Jason Malone went above and beyond to make Miguel feel comfortable and supported. Several team members, including physician assistants Nicole Toro-Keister and Kaitlin Maher, nurses Kaitlyn Cothern and Vihairy Oropeza, and care coordinator, Chandler Crews, incorporated Miguel’s love for Minecraft into his treatment. “They helped Miguel through his surgical experiences by including his Minecraft stuffed friend, ‘Steve,’” says Jennifer. “They made sure Steve had a mask, blood pressure cuff, and IV like Miguel’s and later Steve came out of a procedure with matching double leg casts, just like Miguel! This was a great comfort to him going through the surgeries, hospitalizations, and therapy. Miguel would often explain what to expect to Steve which helped Miguel significantly.”
Currently, Miguel is enrolled in a full-time rehabilitation program in their hometown where he receives occupational therapy and physical therapy to help him learn to walk independently. “Even though we are several hundred miles away now, we still feel supported by the staff at Nemours,” says Jennifer. “We are confident we will be supported with any needs Miguel has. We know we can contact Dr. Standard any time. Miguel’s new physical therapy group has recently been in contact with Emilea, and we know that will help facilitate his continued rehabilitation. Miguel will probably need at least 1 more small surgery, and because of the positive experiences we had at Nemours, we don’t want to go anywhere else for this. I think Miguel will even look forward to going back!”
To other families navigating similar situations, Jennifer offers this advice, “We would definitely recommend Dr. Standard and Emilea Allen and Nemours. We would encourage families to join social media groups with other parents. We learned so much from other parents both online and at the Ronald McDonald house. The main advice we gave to other parents while we were in Florida was, ‘Ask Dr. Standard.’ We told them that he is very approachable and seems to be able to fix everything!”
