O&P Kids, Then & Now: How Care Changes Over Time

Stan Patterson, CP, owner, Prosthetic & Orthotic Associates (POA), Florida, sees patients from all over the world and many of them are children. “We have a large pediatric practice and find it especially rewarding to work with children,” Patterson says. “There’s nothing like watching a child take their first steps [with a prosthesis].” Erik Schaffer, CP, president and owner, A Step Ahead Prosthetics, New York, concurs. “I’ve had the privilege of caring for hundreds of pediatric patients, each with a unique journey,” he says. “It is challenging to single out just one example.” Indeed it is—as all the clinicians interviewed for this story agreed. Not only do they have stories to tell of the little ones they have provided O&P care for over the years, but each of those patients has left an indelible mark on the clinicians’ lives. Patterson has been providing prosthetic care to Scout Bassett since she was 12 years old. At that time, she had been living in the United States for four years after being adopted from a Chinese orphanage. Patterson says he will always remember his first office visit with Scout, who is now 35. When Patterson asked what her goals were for getting a new prosthesis, “Oh, that’s easy,” she replied, “I just want to have a leg that doesn’t fart when I stand up.” [caption id="attachment_251617" align="alignright" width="358"] What started with Scout’s coaching session with Patterson on her first running blade has grown through the years as she now tests blades for another Paralympic competition. Courtesy of POA Orlando.[/caption] Trying to be serious, Patterson says he asked her if she was sure it was her leg. “Oh, yeah,” Scout said with confidence. “It’s the leg.” When Scout was 14, Patterson encouraged her to try a running leg. She was initially hesitant, but after participating in her first adaptive track event, the teenager was hooked and dedicated herself to becoming a Paralympic athlete. She became a world record holder in track and field, and most recently was named president of the Women’s Sports Foundation. Schaffer met Dan Kosick when the 15-year-old faced cancer and amputation of his right leg. “Collaborating closely with his surgeon, we ensured that his decision to undergo an amputation aligned with his athletic aspirations,” Schaffer says. “It was crucial that wearing a prosthesis wouldn’t prevent his pursuit of sports.” Over the years, Schaffer says he’s witnessed Dan’s transformation from overcoming adversity to becoming one of the world’s top Paralympians, as well as a teacher, husband, father, coach, and advocate for his peers. Today, Schaffer says, that once determined teen is a 46-year-old known as the D-animal. “It’s a testament of his resilience and determination,” Schaffer says. [caption id="attachment_251618" align="alignright" width="310"] Dan on a family trip to Grand Canyon National Park. Dan began receiving care at A Step Ahead Prosthetics when he was 15. Photographs courtesy of A Step Ahead Prosthetics & Orthotics.[/caption] Jeff Ropp, CP, owner, Ropp Orthopedic Clinic, Michigan, started seeing one of his first patients, Scooter, in the 1980s. Five-year-old Scooter had Nievergelt’s Mesomelic Dysplasia, a form of dwarfism that affects the long bones of the extremities, especially the wrists and ankles. “He was extremely competitive and was always playing hard at all types of sports,” Ropp remembers. “Scooter ended up having a fused left ankle and amputation of the right foot, a Syme’s amputation. Both of his wrists were affected as well, but he could hold and use his hands within normal parameters.” Scooter went on to excel in sports, especially tennis, became a motivational speaker, successful business manager, and the father of twin daughters, who both have cerebral palsy. One of the twins, Stella, also has the same form of dwarfism as her father. When Stella turned three, Ropp says, Scooter made the decision to have her feet amputated because the condition prevented her from flexing her feet. “Scooter came to me, and we started working with father and daughter for their prosthetic work,” Ropp says. “I’ve been working with Stella now for almost nine years and she has grown and changed throughout the years.” We asked these clinicians, given their expertise and knowledge of pediatric O&P care, how working with the younger population changes with the passage of time and how they manage the maturing relationships. Influencing Factors In addition to physical, cognitive, and developmental issues, there are a host of other factors and challenges that can influence pediatric O&P care, our experts say. Children, particularly, have the tendency to adapt well to their prostheses—in most cases, better and faster than the adults. “It’s not really an age, but a maturity level,” Patterson says. “We have four-year-olds who tell us exactly how the socket feels and what design they want laminated on it, as well as ten-year-olds who have difficulty communicating what they need.” It depends on the children and the parents, says Michelle Hall, MS, CPO/L, FAAOP(D). “Parents who practice the appointment with their kids prior to the appointment tend to have kids who advocate for themselves at a younger age (this is assuming typical cognitive development),” says Hall, who is the lead prosthetist for Gillette Children’s, Minnesota. “Those parents who always answer for their kids may tend to have kids who advocate at a later age. We try as early as possible to ask kids for their feedback to teach them what is expected when they come to visits.” [caption id="attachment_251621" align="alignright" width="354"] Edriss shares a throwback photo of himself competing in an Aspire track and field event. He has been a patient at A Step Ahead Prosthetics since 1997. Courtesy of A Step Ahead Prosthetics & Orthotics.[/caption] Ropp says that it varies from child to child when it comes to taking ownership of their care. “Depending on the age of the patient when starting prosthetic care and the type of prosthesis—we have put young children in myoelectric prostheses and found they understand the delicate issues of caring for them as they get older,” he says. “But it is interesting how they treat them, normally the girls seem to understand how to care for prostheses earlier than boys.” Another significant factor that can influence care is the multidisciplinary approach, says Schaffer. “Collaborating with the child, their family, the surgeons, and therapists before surgery allows for comprehensive planning and ensures the best possible outcome for the child,” he says. “Engaging in pre-operative discussions and assessments, we can better understand the child’s unique needs, preferences, and goals. This proactive approach enables the development of the child’s unique physical and emotional care for their overall well-being and quality of life.” Ensuring that parents are well informed about insurance coverage is also paramount, Schaffer says. “In addition to considerations related to amputation and growth, navigating insurance often remains a critical component of pediatric care,” he says. Does O&P Care for Children Differ From Adults? Yes, yes, and yes, our experts agree. “Kids are not small adults,” Hall says. “Their environment is different. When’s the last time you were playing in a sandbox or jumping off a bed? Our kids do it all the time, regardless if they’re technically supposed to. I’ve never had an adult call me because they broke a pylon jumping off their bed.” “Children don’t overthink things,” Patterson adds. “And if they fall, they naturally bounce right back up.” Tom Current, CPO, pediatric specialist, Hanger Clinic, and a member of the Cranial Asymmetry Remolding Experts Network, says, “Kids are less cautious, so we need to keep a closer eye on them to make sure they haven’t broken a device.” To that end, Current says, it is important make sure children’s prostheses or orthoses are properly fitted and aligned from the beginning. If not, “Those kids will adapt to what they currently have, and that isn’t always a good thing,” he says. Current also says communication can be hard since children don’t have the life experience to articulate all their feelings. “Melding parent expectations with kids’ needs requires trying different things to get the best results for both parties,” he says. Current adds that it is important to try and stay connected with kids’ interests as those can be reflected in the devices’ aesthetics. Colors and patterns change over time, he says, and the cosmetic aspect of what they want also evolves. [caption id="attachment_251619" align="alignright" width="303"] Dani shares a picture of himself at an Aspire event in 1995. He has been a patient at A Step Ahead Prosthetics since birth. Courtesy of A Step Ahead Prosthetics & Orthotics.[/caption] “With younger kids we talk a lot about food, video games, and sports, while older kids talk about school, family, and future plans,” Current says. “As kids get older, I start to get them involved in understanding the cost of the device and the importance of the insurance coverage, along with the investment their parents are making.” Rick Shultz, CP, agrees. He has worked at POA for 17 years, 12 of those years as a prosthetist. He began going to POA as a patient in 1999 and has worked primarily with children since 2014. “Every kid is different; they all mature at different levels,” Shultz says. “You just need to learn how to relate and meet them on their level and still be able to get them to communicate.” Shultz says patients generally start to take ownership of their care between the ages of 16 and 17. “They let us know when they need a foot shell, a liner, or if their leg isn’t fitting right,” he says. “Parents are still involved due to the necessity of making doctor appointments, etc., but as far as when [kids] begin making decisions about their care, we let all our patients try different feet, knees, and listen to their feedback.” Shultz, who had a transtibial amputation when he was three years old following a lawn mower accident, knows what it’s like to be a child who lived through a traumatic experience and its aftermath. Shultz was still in college and working in tech support at POA when he received a call from then seven-year-old Jake Bainter’s mom, Jodi. “Jake had been injured in an accident with a lawn mower a few years prior, and having exhausted all limb salvage options, they were looking at possibly amputating his leg,” Shultz remembers. “I told Jodi that I was also injured in a lawn mower accident and have been an amputee since age three. That was the beginning of what has become a very close relationship between Jake’s family and mine.” Jake underwent a knee disarticulation amputation, then the prosthetic fitting process began, Shultz says. “We started out with a basic kid’s knee, and as he got taller and bigger, we looked for the sturdiest knees we could find that could withstand Jake’s very active outdoor life,” says Shultz, who added that Jake went through a period where he broke just about every device he was given. Shultz says when the family first started coming to him for care, Jake’s father, Brett, was in a deep state of depression. “He blamed himself for the accident and felt he had ruined his son’s life,” he says. “However, once Jake was fitted with a prosthetic leg and began walking, Brett also began to heal.” In addition to growth and development, the need for parents or caregivers who are invested in helping a child succeed is vital, says Don Cummings, CP/L, director of prosthetics, Scottish Rite for Children, Texas. “If that’s not there, it can really make things more difficult for the patient to use and care for a prosthesis successfully and in general navigate through their childhood,” he says. “The speed at which children heal, grow, and change means we have to do our best to design prostheses that can adapt or be adjusted for growth and that will stand up to their high activities.” Cummings, who has bilateral transtibial amputations due to bacterial meningitis during his freshman year of college, adds that school, friends, peer acceptance, and bullying play a role in children’s lives that can impact how well they will accept or use a prosthesis. Growth and Holistic Care Another challenge children face compared to adults is the speed in which they grow, our experts say. “The biggest challenge is generally the growth children go through and trying to keep them in a prosthesis during that time,” Ropp says. “The other part is getting the insurance to pay for the updated prosthesis during those growth periods.” Hall says it’s also imperative that each time children receive new devices they follow up with physical or occupational therapists, mainly to check in and address any bad habits or mechanics. “This is crucial to ensure they grow as optimally as possible, even though they’re using a prosthesis. It may also help prevent contralateral overuse syndrome,” says Hall, who adds that children should also follow up with a psychologist in preparation for or in response to any major life transition, such as starting school, college, or entering the job market. “These cause anxiety for typically developing kids, but our kids using protheses have the addition of the prosthesis,” she says. Another part of caring for children is making sure appointments are fun, our experts say. Shultz remembers playing during appointments when he was a little boy. “Even though I was only three, I remember going to see a prosthetist for the first time,” he says. “They had a bowling set there for kids, and I remember bowling, but nothing else about the visit. I’m sure that while I was bowling, they were assessing my limb, but all I remember is the fun.” [caption id="attachment_251620" align="alignright" width="393"] Brett, age ten, on a trip to China, and now as an active high school senior. Photographs courtesy of POA Orlando.[/caption] As a prosthetist today, Shultz says, “As I fit and align [children], I let them chase me, or I might throw a ball at them so they need to catch it. We just to try and make it fun for them.” Challenging Cases These clinicians have had their share of challenging and complex cases that have tested their purpose and resolve. A recent case for Cummings involved a young adult who survived a terrible accident and had bilateral short transfemoral prostheses, coupled with a lot of scarring, grafts, fissures, and bone spurs. The prostheses alone would have been challenging, Cummings says, but there were many other factors related to family dynamics, transportation, and the grief process. Everyone was focused on getting the prostheses as soon as possible and going back to normal, Cumming says. “It is a challenge to walk beside the family in a supportive way as they move through the process of their new normal,” he says. “They can be desperate to heal and move on, and that frustration can be directed at us, but the body heals on its own timeline, not ours.” Cummings agrees with Schaffer, who pointed out how important the multidisciplinary team approach can be when it comes to a child’s care, rehabilitation, and recovery. Such was also the case with Cummings’ recent patient. “That [case] really involved our entire team—from the physicians, physical therapy, to nursing, to family services, everyone—all communicating and working together. That team approach was so critical to this patient’s success.” Cummings says when it comes to complicated cases, “The reality is that there is no perfect prosthetist or prothesis. And I know I don’t always have the answers, and from time to time I will fail to meet the needs of a patient and family.” Cummings says those are the toughest cases, “When you struggle with multiple attempts and things aren’t working out well. Then, I think you have to swallow your pride and reach out, even if that means a referral to another O&P provider who may have more expertise in certain areas than we do.” Sometimes it doesn’t have anything to do with fitting a child with a prosthetic device, says Ropp, who remembers his toughest case was working with a four-year-old girl who had just finished chemotherapy treatment for cancer. “We made the prosthesis for her, and six months later the cancer came back, and we lost her,” he says. “The fitting was not difficult, but losing a wonderful little girl was very hard as I am a father of four.” Maturity Comes as the Child Grows Children begin to demonstrate an understanding of and an interest in their own care at a relatively young age, says Schaffer, who gives the example of ten-year-old Laura, who had one of her legs amputated due to cancer. “Despite her young age, Laura displayed a remarkable level of maturity and understanding,” he says. “She often expressed her aspirations of attending Harvard and becoming a lawyer, driven by her desire to have access to the prosthetic devices she needed.” Today, Laura is 43, and while she is a Harvard graduate and a successful attorney, she faces challenges with insurance restrictions of her prosthetic needs, Schaffer says. “This realization underscores her understanding of the changing environment of her care and the role insurance plays in governing it,” he says. Pediatric Care, Not for All Clinicians Finally, Current says that as with any specialty, pediatric O&P care is not for all practitioners, since it takes a different mindset than caring for adults and the geriatric population. Current says it took him a few years of working with children before he felt he had adapted his communication skills to best fit the younger population. He echoes Cummings’ advice that clinicians know the limits of their knowledge or experience and reach out to other clinicians for support or to connect their patients with someone who has the right expertise. “Each day I learn something new from the kids I work with,” he says. “And, ultimately, it is most important that we make sure the patient gets the best care, no matter what.” Betta Ferrendelli can be contacted at betta@opedge.com .

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