Nolan's family traverses the challenges of his diagnosis, finding hope and support where innovative care offers a path forward.
When we first came to Shriners Children’s Spokane, I knew it was the right place for Nolan.
Nolan's bilateral clubfoot, pictured, is a condition marked by both feet turning inwards.
Nolan wears custom casts on both legs as part of his bilateral clubfoot treatment.
Nolan, with mom Kaylie by his side, prepares for surgery at Shriners Children's Spokane.
Nolan proudly sports the boots he will wear on both his feet to continue treatment.
Nolan plays alongside his twin sister, older siblings and his father.
His mother, Kaylie, learned of his condition at her 20-week ultrasound appointment while also pregnant with his twin sister Nora. This began their journey of exploring multiple care options before their search eventually brought them to Shriners Children’s Spokane.
Clubfoot is a common, treatable condition where the foot appears twisted inward at the ankle. While clubfoot may be detected during pregnancy, it is visible at birth. It may affect one foot or both feet (bilateral clubfoot). It tends to run in families and occurs twice as often in boys than girls.
Mother Kaylie and father James explored orthopedic care near their home, but were not satisfied with treatment outcomes in the months following Nolan’s birth. That is when James’ boss, a Shriner from the Al Bedoo chapter in Billings, suggested a second opinion with our pediatric orthopedic specialists in Spokane. With a suggestion that sparked hope, they turned their sights towards Shriners Children's Spokane.
However, the choice came with navigating a new challenge, as the hospital was 12 hours away. In November 2023, the Al Bedoo Shriners stepped in to lighten the family's load. They arranged for travel and lodging to get to the hospital, making the trip to Spokane a reality for Nolan's family.
For parents juggling the demands of caring for a young child with medical needs, along with a second infant and siblings, this support was nothing short of a lifeline. Eliminating barriers to care provided them a brief respite, allowing the family to focus solely on Nolan's care without the added stress of financial strain and travel logistics.
“If I have a question, I know I can reach out and someone will have an answer for me, which is a weight off my shoulders,” Kaylie said.
During the initial consultation, the family met with Ted Sousa, M.D., who introduced them to various clubfoot treatment options, including the rapid casting procedure. It is most similar to the Ponseti method, which entails gentle massage and gradually moving parts of the foot to stretch the tight or shortened segments of the clubfoot into a better position.
Dr. Sousa explained, "Our goal with the rapid casting method is to provide effective clubfoot treatment while minimizing the burden on families."
Regular clubfoot casting involves changing casts every seven days. However, for families traveling long distances, the rapid casting method has been highly effective. With this approach, casts are instead changed every three to five days, reducing the casting period to about three weeks. The exact time frame varies from patient to patient.
For Nolan's family, the speed and efficiency with which Shriners Children’s Spokane provided care were a revelation. Here they found a team of professionals ready to act swiftly for the well-being of their son. Dr. Sousa, with his experience and compassion, became an advocate for Nolan's future. “Everyone we have met at Shriners Children’s Spokane has been welcoming and has listened to our concerns,” said Kaylie. “It truly is a wonderful hospital with fantastic people.”
Come January 2024, 9-month-old Nolan took a significant step forward in healing with the commencement of his treatment plan. During a two-week time frame, Dr. Sousa and his team delicately stretched and cast Nolan’s feet. Every few days, they would remove the soft cast and replace it with a new one, a process that will gradually help correct his bilateral clubfoot. Through it all, Kaylie and Nolan’s twin sister Nora were able to remain by his side while staying at the on-site family center.
“I wish I had started his care with Shriners Children’s Spokane originally,” remarked Kaylie. “I’m so glad they have been able to take care of Nolan and help get him back on track to be successful with his treatment.”
When discussing Nolan's progress during the treatment, Dr. Sousa emphasized, "Consistency and precision are key in managing clubfoot. We're here to ensure Nolan receives the best care possible at every step of his treatment plan."
At the end of the two weeks, Nolan underwent a tenotomy to support the rapid casting treatment. It is a procedure to lengthen the Achilles tendon. Shortly after surgery, Nolan and his family returned home to Montana. He will return monthly to monitor his progress and eventually be fitted for a clubfoot brace and bar.
That special brace consists of two high-top, open-toed shoes affixed to a metal bar. Initially, it must be worn full-time (23 out of 24 hours a day) for the first three months. Following this period, patients will undergo a clinic evaluation. The brace will be worn solely at night and during naps if the foot shows positive progress. Typically, children with clubfoot will continue wearing the brace until age 4.
In some cases, patients who live far away from the physical hospital can be fitted with their boots and bar at one of Shriners Children’s Spokane’s outreach clinics. The clinics are designed to provide the same level of care, just closer to the patient’s home.
“Short-term goals are to help Nolan learn to walk and put weight on his feet without the boots and bar,” said Kaylie. “Long term, I want him to be able to do the things my other children can.”
The long-term outlook for patients who undergo clubfoot casting and treatment is good. Most patients enjoy fully functioning use of the once-affected foot.
Commenting on Nolan's prospects, Dr. Sousa reassured the family, saying, "While it may seem daunting now, most children with clubfoot go on to live active, fulfilling lives. With the right treatment and support, Nolan has every chance to do the same."
“I want him to run and jump and play sports, I want him to chase his brothers and sister, I want him to continue to improve every day,” said Kaylie.
Nolan's family faced his diagnosis with courage and optimism, knowing they had the support of Shriners Children's Spokane every step of the way. With each visit, they witnessed firsthand the dedication and warmth that permeated every aspect of care.
"We're privileged to be part of Nolan's journey,” reflected Dr. Sousa on the family's experience. “Our team is dedicated to providing compassionate care and support to every child who comes through our doors."
Nolan's treatment will continue for several years, but his family takes comfort in the knowledge that they're in good hands. With Shriners Children's Spokane as their ally, they are confident that Nolan will overcome his challenges and thrive.
