Like a lot of 9-year-old boys, Zachary Pamboukas has an impish streak.
Born without a portion of his right arm below the elbow, the Seattle-area fourth-grader sometimes is asked about his missing arm.
“I’ll tell them, ‘I lost my hand in the war,’” he says. “Or I’ll say, ‘A shark ate it.’”
Zachary’s playful answer belies an uncomfortable truth: It’s not easy to go without a limb. Besides the physical limitation, experts say that children missing a limb can experience lasting psycho-social effects that can shape the course of their lives.
“Many times these children have some social stigma and they’re embarrassed of their affected limbs,” said Albert Chi, M.D., an associate professor of surgery in the OHSU School of Medicine.
Limbitless Solutions, the nonprofit organization based at the University of Central Florida, is ramping up the “cool” factor for kids with congenital limb loss. The organization, founded by students at UCF, produces custom-made prosthetics using 3D printing technology. They’ve built and distributed prototype myoelectric – or bionic – arms designed to match a child’s unique interests. Zachary, a fan of Spider Man, sports a web-themed forearm.
A newly announced clinical trial aims to test the functionality of a more-advanced version of the arm, gauge the effect on quality of life, and determine how children are using the arm for specialized tasks.
Experts who have worked with Zachary and other kids who have received prototypes say they’ve already noticed a major difference in attitude.
“It has a huge long-term effect on the goals that they’ll set, how comfortable they are going to school and thereby studying really hard to go into a field like science, or engineering or medicine,” said Albert Manero, Ph.D., president of Limbitless Solutions. “A beautiful, expressive arm not only gives them the tools they need for their daily tasks, but gives them the confidence to chase all their dreams and become anything they can imagine.”
Advanced prosthetics have been challenging for children because of their relatively high cost and the fact that children quickly outgrow them. Advancements in 3D printing technology change that dynamic, providing an opportunity to easily replace prosthetics as children grow and their tastes change; Zachary is already interested in updating his arm to Iron Spider, a comic book spinoff character.
“The key benefit is really the cost,” Chi said. “The ultimate aim is to provide 3D-printed prosthetic devices to children at no cost.”
The U.S. Centers for Disease Control and Prevention estimates 4 in 10,000 kids are born with a congenital upper limb deficiency, in addition to people who lose limbs through accidents or disease such as cancer. Zachary wears his prototype three or four times a week, helping him to hold down paper for school work and to grip the handle on his bike.
“When I first wore it to school, some kids asked, ‘What is that? Can we feel it?” he said. “They wanted to see it and look at it. They thought it was pretty cool.”