There’s no prosthesis in the world that can stand the force of a child for long.
Jeff Quelet, CPO, chief manufacturing officer for Ability Prosthetics & Orthotics, Hagerstown, Maryland, says his personal experience proves that statement. At age nine, osteosarcoma necessitated a transfemoral amputation of his right leg, and thus began his new life of systematically breaking every device with which he was fitted. He wore out his components by moving all day long, playing, and having fun. He says he also did the kind of damage that only children can do.
“My stories are vast and many,” Quelet says. “There are some I want to forget.” For example, there is the time he decided to take off his leg and use it to ring a bell at church, thus fracturing the wood in his shin system, or when he decided to hang upside down from a sign, cracking the hip joint. Then there were all those times at Boy Scout camp when he would pretend to swing an ax incorrectly and bury it into his prosthesis to scare campers who didn’t know about his leg. “My mom was never a fan of that one,” he says. “I went through a lot of cut-up jeans that summer too.”
The truth is, no matter the technology, durability, or quality, children are going to break and wear out components faster than their adult counterparts, Quelet says.
He compares pediatric patients to racecar drivers going 100 miles per hour (mph) all day long, while adults tend to drive their cars at 40 mph. “You’re bound to have more breakdowns going 100 mph all of the time than 40 mph,” Quelet says. “From a manufacturing perspective, they still haven’t developed a product that kids can’t destroy. They are so active [that] it doesn’t matter about their weight, about their height. It just matters about their impact. A high-impact kid is bound to break something.”
The activity, abuse of componentry, and growth spurts all make treating children a special challenge for O&P practitioners. Still, the experts say, there are a lot of things practitioners can do to make the devices last a little longer while keeping their young patients healthy and active.
“I guarantee the prosthesis will fail,” Quelet says. “I just want to make the failure take a little longer.”
Have the Right Attitude
O&P practitioners need to accept that constant componentry failures, repairs, and growth spurts are just a part of treating pediatric patients, says Justina Shipley, CO, BOCPO, MEd, FAAOP, director of orthotics and prosthetics at Shriners Hospitals for Children—Shreveport, Louisiana. She’s learned to have a sense of humor when children show up with broken components after they jump out of trees, play in sandboxes, jump on trampolines, or in one case, turn in a limb with bite marks as a result of a patient deciding to use it to play tug-of-war with a dog. “I don’t think we know half of the stuff that really happened,” Shipley says. “Much of the time they will just mail them in for replacement of broken parts, and we’re left wondering about it.”
That kind of attitude helps when the job gets difficult. By and large, Shipley’s patients were born with birth defects resulting in limb deficiency; every patient is different and his or her device needs customization for the right fit. Her job is to find the perfect fit and try to communicate with some children who aren’t even old enough to talk or may have communication deficits due to their diagnoses. “Some kids are too young to tell you where it hurts; for example, you may have an 18-month-old who will start walking but then will just stop. It’s often difficult to determine what the problem is.”
These types of communication problems can make it even more difficult to keep a good attitude, says MacJulian Lang, CPO, FAAOP, clinical director of the Advanced Arm Dynamics (AAD) Northwest Center of Excellence, Portland, Oregon. “One of the challenges of working with a child is that they are less rational,” he says. “You are on their timeframe. You can’t tell them that they have to put up with something for a short period of time because it will be good for them in the end.” Lang also recommends working around the child’s schedule and avoiding appointments during nap time for young children. “It is important to make sure you aren’t trying to do too much and end up wearing a child out,” he says.
Kerstin Baun, MPH, OTR, OTL, rehabilitation coordinator at AAD’s Northwest Center of Excellence, says the best way to find out about a child’s needs is simply to play with him or her. “Play is kids’ ‘work,’” she says. “They learn through play, and we get to know who they are and what their interests are through play, versus adults with whom we communicate primarily verbally. Through play, kids will learn how to use their prosthesis and ultimately the prosthesis will enable them to play with a greater variety of toys and participate in more activities.”
While it’s certainly more work to find the right fit for a child and constantly update the outgrown or broken components, it’s worth the effort, says Kevin Carroll, MS, CP, FAAOP, vice president of prosthetics for Hanger Clinic, headquartered in Austin, Texas. In general, children tend to adapt to their prostheses faster than adults do. “Kids are relaxed and are just hilarious,” he says. “Most prosthetists enjoy working with kids. They just love it.”
Pediatric patients tend to enjoy their prosthetists as well, Quelet says. However, by the time he meets his patients, most have seen several physicians for various reasons and are wary of the medical world. Through time, the relationship can become close. “Most of the time, the pediatric patient confides in the prosthetist because they know we won’t be cutting them or injecting them with anything,” Quelet says. “We are just there to help them be a normal kid.”
Keep Constant Watch
Once adults have been fit with a permanent prosthesis, they can often go a while without a new fitting or seeing their prosthetist— not so for children.
“Overnight it seems as if kids grow,” Carroll says. “It’s not just the height of the prosthesis, but they will also grow out of the socket. We have to constantly monitor the socket.” He encourages his patients to come in every three to six months, but that can be difficult depending on family schedules, he says. At each appointment, he monitors their height and weight to make sure that everything fits as it should.
Some manufacturers have growth plates to help lengthen the pylon. They’re helpful, Carroll says, but aren’t the only solution. “You can only put on so many plates before you have to just get a new pylon,” he says.
Quelet says he tries to transition his patients to adult components as soon as they are able. He’s found that the adult components tend to hold up longer than those made for children. “The smaller the component, the quicker it breaks,” he says. “If I can transfer them to [components made for] adults, the breaks occur less frequently.”
The good news is that children are adaptable and can often make almost anything work for them, Shipley says. Unfortunately, that also means that they don’t stop, even when they should, because their prostheses need to be adjusted or repaired. She’s had some patients who have had their prosthetic feet rotated at a 90 degree angle, “and they just keep running,” she laughs.
When components are worn out, and not just outgrown, insurance coverage can be a difficult issue, Shipley says. Sometimes there’s no medical justification to give to the third-party payers. “There’s no practitioner or physician documentation in the claim saying that there was a volume change, or the kid grew, [or] the adjustment or repair is because the components just wore out,” she says.
Carroll says he tries to get families to swap devices their child may have grown out of, but that can be rare because they are already well worn. “Kids are so active these days that there is less and less that we can swap around,” he says. To help, he says his office tries to get donated products from manufacturers and various foundations. For example, the Challenged Athletes Foundation (CAF) offers grants to help children as well as adults acquire sport-specific prostheses and other adaptive equipment.
Find a Balance between Durability and Technology
At Shriners, Shipley’s aim is to help as many children as possible with the money she has in the department’s budget. She knows that her patients will soon outgrow items or quickly wear them out, so the components she chooses must have high durability coupled with low cost. “We end up putting them in SACH feet and using componentry that is old school because it is just more durable,” she says. “The new technology is great, but for kids, they give it the test. They jump out of trees with hydraulic knees.”
She admits the issue leaves her a bit torn. She knows that parents want the latest and greatest technology for their children, but unless it’s medically necessary, she can’t always be the person to give them those devices. “You don’t want to take the high technology away from the kids, but you have to weigh it ethically,” Shipley says.
Parents are good advocates, Carroll says. “If the parents are so determined to get a sports prosthesis for their child, they will exhaust all avenues,” he says. “But if it isn’t medically necessary in the eyes of the insurance company for the kids to have those kinds of components, it’s difficult.”
Some technological advances, such as carbon fiber feet, can help a child keep up on the playground, Carroll says.
“We find a lot of these kids want their ‘runner legs’ to be their everyday legs,” Carroll says. “It’s not just because it’s cool. It’s because it’s fundamentally functional for them and allows them to be super-active and keep up with their peers.”
That said, not all new technology is right for pediatric users, he says. The complexity of the components change as the child does. For example, one of his patients is very active and even enjoys wakeboarding. The older she gets, the harder she is on her components, but she’s also more responsible. He plans to give her stronger and more complex components as she ages. “By the time she’s 14, she could be in an advanced knee system,” he says. “She could very well be in a microprocessor knee.”
Many of the truly advanced components, such as microprocessor feet or knees, aren’t a good fit for young children, Quelet says. They grow so fast and the components are very expensive to replace, and also, they will probably end up doing something very childlike with their advanced systems. “One day they might just decide they want to play in a creek with their friends,” he says.
One of the best ways to help a child succeed with his or her prosthesis is to have a good relationship with the parents, say Lang and Baun. Parents are the ones who have to monitor their child’s prosthetic use, whether to determine if the socket has grown too tight or if their young child is about to go do something that could jeopardize the device, they say. “You play with the kid and you train the parents,” Lang says.
Baun agrees. “Parents are key to success,” she says. “They will be carrying out the wear schedule, donning and doffing the prosthesis until the child is old enough to do so…. [I]t is very important for us as clinicians to be ‘training the trainers’ and making sure their questions are answered and that they feel confident in all aspects of their child’s prosthetic care.”
Sometimes that communication can be difficult, Carroll says. If the parents are working, grandparents or other caregivers are often the ones who show up at appointments with the child. By the time information passes through them to the parents, some key messages can be lost. If he is fitting a child with a new component, he will often print information for the parents or e-mail them directly. Carroll says, “We have to be very articulate and precise in how we get our message across.”
Shipley says clinicians also need to keep the psychological needs of parents in mind. They can be emotional over their child’s need for a prosthesis or may even feel guilty that their child needs one in the first place. “Parents are a big part of the picture for the pediatric patients,” Shipley says. “You have to keep in mind their feelings and needs. They have to help you help the child.”
To help parents and their children through their emotions, Carroll says he will often direct them to camps such as Camp No Limits and the Amputee Coalition’s Paddy Rossbach Youth Camp, or direct them to Hanger’s Amputee Empowerment Partners (AEP) website for support.
Making connections with other parents with similar experiences can help calm parents’ worries and focus on the next steps for their child. For example, parents with children who have lost limbs due to bone cancer may feel more at ease after talking to families who have gone through the same experience.
Embrace the Problems
If there’s one thing you can always count on when treating a child, it’s that components will break. Shipley says that knee units and gel liners are often the first components to fail. “It’s any moving part, really,” she says. “[Children] are also hard on prosthetic socks.”
Knowing that parts will fail, Carroll simply plans on it. “We typically always have a spare knee on the shelf ready to go, [so replacement] goes really quickly.”
Quelet also says he makes sure to have certain components stocked and ready for some of his pediatric patients, “because I know they will be calling on Friday at 5 p.m.”
When those failures do happen, they should be embraced, because it means the children are challenging themselves by doing what the other children do—and that should be the end goal for all prosthetists, he says.
Even when he recommends that children keep their components away from the sand of the beach or the salt water of the ocean, Quelet’s not mad when they don’t listen. “It’s just mechanics; I can replace mechanics,” he says. “I can’t replace memories.”
Maria St. Louis-Sanchez can be reached at