by Sarah Tuberty, OTD, OTR/L
“What is dating like? Are people OK with your limb difference, do they want to hold your hand?
“What are things you wished your parents did?”
“Were kids mean to you in school?”
These are all variations of common questions new parents of children with congenital limb differences have asked me, as an adult with an upper limb difference, in the past 10 years. These questions come from places of wanting to know more about this experience and what action steps parents can take now.
A congenital upper limb difference refers to any type of difference: differently shaped features, additional features, and/or reduced features of the fingers, hands, arms and shoulders that were present at birth. Acquired limb differences are any type of difference that was collected after birth. Hand difference and limb differences are currently both used interchangeably in our social climate, however, terminology may change in the future. Parents and families can chose the language they feel is best appropriate for them.
Congenital limb differences are common, however not quite common enough that every family with a limb difference will know of another family in their community that also has a limb difference. This can leave parents feeling confused and disoriented when working to process the news of their child’s limb difference. Ultrasound technology has advanced in such a way that sometimes parents will know of a limb difference before their child is born.
The healthcare system can be complicated to navigate. There may be many more healthcare providers and specialties that perhaps parents have not interacted with in their own care, which can feel tough to navigate. It would be beneficial to help create an outline for how to organize care options so parents can feel empowered to make decisions in directing the care of their children.
What are some strategies to help parents navigate raising a child with a limb difference?
1. Identify the emotions parents may be feeling and seek support from family or friends.
2. Research the type of child’s hand difference and take notes.
3. Choose the language parents and families want to use when talking about their child’s hand difference.
4. Create an organizational system for doctor appointments.
5. Learn about surgical, prosthetic, and therapeutic treatment options and take notes.
6. Find and develop supportive communities.
7. Research school and government resources that may be helpful.
8. Feel empowered! Parents and families totally got this!
For the past 10 years, I have had conversations with parents and families through summer camps for children with limb differences. These families shared their stories with me and identified such a need for support. This leads me to my initial deep dive into researching and creating resources to help support parents of children with congenital limb differences through my work in my Occupational Therapy Doctorate programs. I am so thankful to have partnered with fantastic leaders in the field of pediatric hand care. With the culmination of all of this, I am so excited to share this resource, The Hand Book: An Informational Guide for Parents of Children With Hand Differences, co-authored by hand surgeon Nina Lightdale-Miric, MD with a foreword by hand surgeons Marybeth Ezaki, MD and Michelle James, MD. The Hand Book is published by the American Society for Surgery of the Hand and funded by the American Foundation for Surgery of the Hand and can help guide parents through the action items listed above from their child’s birth to when they are independent adults.
This is a welcoming recourse to help empower parents to review general outlines of options such as prosthetic devices, surgery, and therapy. There are sections on navigating the whirlwind of emotions and discussion on grief and coping, and an overview of types of limb differences and current theories on their development. Each chapter has elements to engage in reflective questions to assist in processing all of the information from the text and information received from independent research and conversations with the medical team. Ultimately the goal of the book is to welcome parents and empower them to help reimagine a bright future for their child and begin to develop a plan that works best for their family.
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This book is made possible by the American Society for Surgery of the Hand
Sarah Tuberty, OTD, OTR/L is an Occupational Therapist and disability advocate who grew up with a congenital limb difference. She is dedicated to developing the resources she wished she and her parents had access to when she was younger to help create a kinder and more inclusive world where kids feel empowered to be themselves and follow their dreams.