April 10th, 2019 | Published in Amputee Stories
Jamie White wears a prosthesis, but she is not an amputee. Nor is her condition common. Jamie was born with proximal focal femoral deficiency (PFFD), a condition that occurs in one in 50,000 to one in 200,000 births. PFFD is a congenital anomaly of the pelvis and proximal femur, which causes hip deformity and shortening and altered function of one or both lower extremities.
There are several degrees of PFFD, where the femur is shortened, flexed, abducted or externally rotated. Some patients opt for leg-lengthening, rotationplasty, or an amputation. Every case is unique and for Jamie’s situation, her parents opted not to have surgery.
Jamie was accepted as a patient at Shriners Hospital for Children – Houston when she was four months old. Her condition was initially treated with shoes built up with a vertical lift.
“I started with shoes but as I got my balance, I was fitted with a prosthesis when I was six years old by Muilenburg practitioner Ben Chadwell, CP, through Shriners Hospital. I have a fully-formed foot, but I don’t have a lot of motion. My bones are fused at my hip,” Jamie said.
“When I was little it took me longer to walk but I didn’t feel limited. I had good family support. In school, I was able to do everything in physical education classes except run.”
When Jamie turned 18, she left the Shriners system and continued as a patient of Muilenburg Prosthetics, Inc. After graduating from Texas State University in San Marcos, she switched her prosthetic care to a facility in Austin, where she has lived the past six years. But she found that the care was not satisfactory. “I didn’t have a positive experience,” she said. “I was dissatisfied overall with the service. I wasn’t comfortable and when I went in for adjustments, they basically blew me off. Then my parents received a letter about the free clinic Muilenburg offered in October.”
Shortly after Jamie attended the clinic, she became a patient of Richard Brunner, CP, who used his skill and creativity to create a prosthesis for Jamie that gives her leg extension, comfort, and mobility.
“The prosthesis she is wearing is an extension of her natural foot,” Richard said. “After casting her foot, I fabricated a hard socket built up with an acrylic laminate and light-weight components. Her foot fits straight down into the socket and is supported from the back of her leg. It is held into place with Velcro straps. Her prosthetic foot is a College Park Tru-Step. Jamie has expressed how the foot has helped her to walk better in normal situations around town, on stairs and slopes, as well as having a smoother gait from heel to toe. The College Park foot is a multi-axial foot and ankle combination that gives back what was lost or never there for the patient – ankle motion in all directions. Although her left leg is shorter than her right by almost five inches, with the prosthesis, the legs are of almost equal length.”
“Jamie’s prosthesis is customized to meet her unique needs,” said Richard. “But it provides her ambulation and stability.”
Jamie works as a manager for The ARC of the Capital Area, an organization that provides services to adults and children with developmental disabilities, and is happy she returned to MPI.
“Going to Muilenburg for care is a trip for me, but it is worth it for so many reasons,” she said. “Many of the people working there I still remember from my first visit after Shriners. And Richard was able to help me feel more comfortable.”
“My other prosthesis was dated and didn’t have shock absorption, flexibility, or give me the mobility I needed. Richard was able to correct that.”