I recently attended an international meeting called ACPOC, which happened to be held within driving distance of Denver this year. This was a highly scientific meeting and the membership was composed of surgeons, physicians, therapists, engineers, and prosthetist/orthotists, among others. The lectures ranged from case presentations to new surgical procedures to research studies. We were invited to bring our own difficult cases to present to the audience for their input. Being at ACPOC really got me thinking about the kids I’ve provided care for throughout my career.
The pediatric population needing help from orthotic and prosthetic professionals is as diverse as the adult population. My specialty is prosthetics, so the focus of this article will be the intervention of absence of an extremity rather than the intervention of an extremity itself. In other words, orthotics addresses correction of a deformity, protection of an injury, and assists in motion, for the most part. Prosthetics, on the other hand, addresses limb length discrepancy and uses biomechanical principles to replace the absent limb and transfer forces in the most comfortable way possible to the residual limb.
Pediatric prosthetics is especially interesting to me because my wife, Emily, was born with a somewhat rare condition called fibular hemimelia along with a significant leg length discrepancy. This is a longitudinal deficiency affecting the lower extremity either bilaterally or of a single leg and in various severity. For Emily, it involved just her left leg. Since the smaller bone of her lower leg (fibula) was completely absent and because the foot was pretty much non-functional, the foot was ablated at age two and a reconstructive amputation was performed so that she could be fit more easily with a prosthesis. From then on, she went on like any other kid not thinking much of it. Each year or so, she’d go back to the prosthetist and get a new leg because she outgrew it and because she ran out of duct tape to hold it together! When I first visited her parent’s house, her mom had all of her old legs lined up in order of short to tall. Somewhere along the way, Emily discovered fabric patterns and made the switch from the boring flesh tone sockets to having bright and colorful sockets.
Emily is an example of a child born with a partial limb absence. Although she had an amputation because her absence was only partial, because she was so young when the amputation was performed, she grew up not knowing any different. Often, kids who are either born without a limb or who have an amputation at a very young age don’t experience the phantom pain that adults deal with and they tend to compare themselves to other kids in their peer group. In contrast, those with acquired amputations later in life often compare their function to the function that they remember before the amputation, which can sometimes be a more difficult comparison.
As a prosthetist, there are differences when treating kids versus adults. For example, we have to factor in growth, which means we might have to build the socket bigger at first in anticipation of the kid growing constantly, and sometimes quickly. Additionally, follow up is important, especially after growth spurts or at least every 6-12 months. Collaboration with other healthcare professionals is also important in order to understand planned surgical procedures and to verify prosthetic alignment through x-ray. Peer support may also be important, although many kids do not even realize they are different than their peers who were born with all their limbs, so it may be less important for the kid. That said, parents can benefit greatly from getting to know other parents of kids with limb deficiencies, as well as adults who had an amputation at an early age. Sports/recreational activities should be encouraged, and help from parents, coaches, and prosthetists can help a lot to make sports/recreational activities a success.
Children with limb deficiency or acquired amputations have diverse presentation and the treatment is also diverse. Prosthetic options for the arm range from no prosthesis, a basic arm to push with, a body powered cable driven device, or an electric powered device. Prosthetic options for the leg range from very basic feet to carbon fiber running feet. Children with above the knee amputation benefit from an articulating knee. Important considerations should be taken for children with unstable hip and knee joints. Prosthetic alignment is also important to optimize efficiency of gait and to protect the anatomical knee joint.
Body image is an important topic for both kids and adults and it’s interesting how society has changed with regard to the perception of prosthetics, perhaps with the increased media attention to military amputees in the news. I used to do a lot of cosmetic covers, trying to make the prosthesis appear real. Most of my patients nowadays embrace the bionic look and opt not to receive a cover. For more about Emily’s perspective, check out her blog post about body image: https://lim359.wordpress.com/2014/01/23/my-twisted-sense-of-body-image-by-emily-h/
It’s also important to remember that as kids get older, their needs and priorities may change. As a parent, Emily’s mom would say that she treated Emily like any other kid. Of course, if her leg was hurting, she was empathetic, but other than that, she didn’t focus on Emily’s disability, and therefor Emily didn’t focus on her disability. Emily rode competitively in 3-day eventing horseback riding competitions in high school and college and, more recently as an adult, has taken up the sport of triathlon. Emily’s limb deficiency and amputation affected her minimally while growing up because of her fortunate residual limb condition, positive family support, and a good healthcare team throughout the years.
One of the things I always try to remember is that part of my job as a prosthetist is to provide a supportive environment in which my patients have they opportunity to grow both physically and emotionally because they have a well-fitting prosthesis – this is not unique to the pediatric population and is something I keep in mind regardless of the age of my patient.
For more information about ACPOC, check out: http://www.acpoc.org/