Blending Amish Tradition With Modern Prosthetic Devices

Throughout Elizabeth’s care journey, she transitioned from a young girl recovering from an accident to a young adult who skillfully advocated for herself.

Elizabeth's story is one of resilience, determination and creativity deeply rooted in the close-knit Amish community of Conewango Valley, New York. When Elizabeth was a young girl, an unforeseen accident resulted in the loss of her arm. For a while, she navigated life without a prosthesis. It wasn't until she turned 5 that she received her first prosthetic arm from Pediatric Orthotic and Prosthetic Services (POPS) at Shriners Children's Erie.

Alex Betancourt, MS, MBA, CPO, Hannah Clark, CPO, and Emily Madder, OTR, BS, worked closely to create prostheses and adaptations that would allow Elizabeth to meet her personal goals. Her prosthesis had to be adapted not just for general daily tasks but also for the unique demands of Amish community life. Additionally, it was crucial to address age-appropriate goals in occupational therapy, such as playing with peers, developing fine motor skills and achieving other developmental milestones. Occupational therapy focused on integrating these aspects into Elizabeth’s prosthetic use, ensuring she could engage in typical childhood activities while also progressing through key developmental stages.

“One of her unique goals was to learn how to crochet, so we worked with POPS to drill a small hole in her terminal device that would hold the crochet hook. It’s that kind of collaboration between occupational therapy and POPS that allows us to develop functional solutions for our patients, tailoring care plans that fit their daily lives,” said Madder. This approach helped Elizabeth balance her daily responsibilities with growth and play, making the adaptation process more comprehensive and supportive of her overall development.

Occupational therapy played a crucial role in helping Elizabeth adjust to her prosthetic arm by teaching her how to perform tasks in new ways. Madder worked with her to build shoulder strength and dexterity in using her prosthesis for everyday activities. “A goal I have been working towards with Emily, is being able to roll up my sleeve with my prosthetic arm. I am so close,” shared Elizabeth excitedly.

Meanwhile, Betancourt and Clark focused on creating custom devices and attachments that could be integrated with her prosthetic arm, specifically tailored to help her accomplish the tasks required in her lifestyle. This included designing tools for shucking corn, butchering, baking and chopping wood. Each device plays an important part in allowing Elizabeth to maintain her independence and actively contribute to her community. The collaboration and open communication between the POPS and occupational therapy teams ensured that the prostheses and the skills Elizabeth developed were fully aligned with her life and goals, making the adaptation process smoother and more successful. “Elizabeth is such a successful prosthesis user because she fully understands the functions and mechanisms of her arm. Patients who experience a traumatic amputation often reject prosthetic arms. It takes a lot of practice and repetition to master the use of one,” said Betancourt.

Craftsmanship is central to Amish culture, with skills often passed down through generations. Elizabeth's uncle, an ironsmith, incorporates this tradition by using his ingenuity to create custom devices tailored to her numerous unique needs. His ingenuity became invaluable in expanding the range of tools Elizabeth could use with her prosthetic arm. Because of the POPS team and her uncle, Elizabeth possesses a chest full of versatile devices that assist her in all aspects of her daily life.

Providers at Shriners Children’s Erie consider Elizabeth to be one of their most proficient users of a prosthetic arm. “Elizabeth is the most proficient prosthesis user that I have ever seen in pediatrics and adults. She is the ultimate patient when you think of someone who has completely embodied her device, which is a key part of her success,” said Clark.

Elizabeth excels at completing fine motor tasks, including washing, starching and pleating her bonnet, changing cloth diapers, using safety pins, crocheting, sewing, embroidering and braiding her sister's hair. "There is nothing we believe Elizabeth cannot do. She is just like everyone else and we have raised her to believe that as well," said Elizabeth's father, Stephen.

Not only is Elizabeth a star prosthesis user, she and her family are also generous with their time and wisdom when it comes to sharing their story with other pediatric families and patients with limb loss. “Elizabeth is happy to share her experiences to other children that anything is possible with a prosthetic arm; they just need to practice,” added Betancourt.

As Elizabeth approaches the transition from pediatric to adult care, Shriners Children's Erie is actively involved in finding her a new prosthetist who can meet her evolving needs. This careful planning is designed to make the transition as seamless as possible, ensuring that Elizabeth continues to receive the same high level of care and support as she moves forward in her journey.