LAS VEGAS — When Jen Reeves gave birth to her daughter, Jordan, 9 years ago, she had no idea how to parent a congenital amputee. Jordan was born without a left arm, and Reeves was unsure where to turn when she left the hospital with her new baby.
“There was zero support [at the hospital], zero input. I had no idea what I needed to do,” she said during a talk at the Hanger Education Fair and National Meeting. “I needed to find resources because there were none. In 2005, there was really nothing – there was one Yahoo [support] group.”
Fortunately Reeves, a former journalist, had research skills that she immediately put to work.
“I was ready to dig,” she said. At the same time, she began documenting her experiences with Jordan – and connecting with other parents – through her blog, “Born Just Right.”
Reeves shared her story to help O&P practitioners understand the needs and expectations of parents of pediatric amputees. Reeves said Jordan tried to use a myoelectric prosthesis for years even though it was not the right device for her simply because the family did not know any better.
“I knew that the myo was wrong [but] there was no one helping me learn what [our options were],” she said.
One day a prosthetist took the time to show Reeves a variety of different prosthetic arms and explain the benefits and drawbacks of each.
“We ended up learning about a lot of different hands, and we learned about building hands that have purpose,” Reeves said. “Jordan wanted to dance and do activities … Now she is 9, and we are still very focused on [prostheses] that have a task behind them.”
Of course, Jordan’s “helper arms” are more than just tools – they are part of her. Her current prosthesis is sparkly and decorated with dragonflies and butterflies.
Now Reeves helps other parents connect with resources through her blog and works to provide support for Jordan through programs like Camp No Limits, where she can meet other amputees. Some of the most common questions parents will have, according to Reeves, include:
- What is this limb difference thing?
- Who has resources?
- Does my child need prostheses?
- Are there health concerns?
- What kind of societal challenges will my child face?
Thanks to the community Reeves has found through O&P practitioners, Camp No Limits and her blog, she believes Jordan can do anything.
“There is really no holding her back,” she said.
Kevin Carroll, MS, CP, FAAOP, vice president of prosthetics for Hanger Clinic, reminded attendees that Reeves and her daughter are an example of “the consumers of the future” for O&P.
“This is our future: communication,” he said, adding that practitioners need to make it part of their job to help patients and their families become well educated on their options. “We need to know how to communicate.” — by Amanda Alexander.
Disclosure: Reeves and Carroll report no relevant financial disclosures.