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Pediatric Orthotic and Prosthetic Services team creates specialized device for child

Pediatric Orthotic and Prosthetic Services team creates specialized device for child

Amidst the work benches, air hoses and gadgetry of the Pediatric Orthotic and Prosthetic Services (POPS) – Southeast, LLC shop at Shriners Hospitals for Children — Shreveport, a team of fabricators gathers around a unique device. Over the course of several days, the team has collectively assembled a one-of-a-kind apparatus designed to give mobility and independence to a child with complex anatomical challenges. In the central activities area adjacent to the fabrication shop, a mother tends to her son, anxiously anticipating a moment she was told would never come.

“The doctors told me that Jesus would probably not survive, or that he would suffer from tumors, may not talk, have cleft problems and numerous other complications,” mother Luisa recalled. “That’s what they told me because of all the problematic things that are possible with his condition.”

Three years earlier, as part of prenatal examinations, physicians in Luisa’s hometown in the Republic of Panama found that her unborn child possessed a rare genetic disorder known as tetra amelia syndrome. The condition is characterized by the absence of all four limbs and is often associated with numerous additional skeletal and soft tissue/organ malformations. Due to the severity of the condition, few with the syndrome survive beyond birth.

When Jesus was born, he exhibited the quadruple limb deficiencies associated with the syndrome, but appeared to demonstrate no additional complications. When he reached age 1, Luisa sought the help of the Shriners Hospitals for Children — Shreveport medical team during their annual outreach clinic in Panama City. Though the clinic had reached capacity, staff members were able to take Luisa’s information and scheduled an appointment for their clinic in the spring of 2017. During that visit, hospital staff arranged for a visit to the Shreveport facility, while also cautioning that treatment options for Jesus were somewhat limited.

“When we arrived in Shreveport, the doctors and staff said very early on that it would be difficult to help Jesus given his condition,” Luisa said. “But everyone was very determined as they planned a course of care for him.”

Upon Jesus’ first encounter with the POPS team at the Shreveport Shriners Hospital, practitioners took measurements and created a cast of his torso. The cast allowed the team to experiment with creating a device designed to achieve two key objectives: allow Jesus to be positioned upright, and allow him to use the device to ambulate. From their previous encounter with Jesus in Panama, the team knew his anatomy would pose unique challenges.

“The main consideration in building a device for Jesus is that he has absolutely no residual limbs – there are no structures to suspend a prosthesis with,” said Jillian Elwart, certified prosthetist for the Shreveport Shriners Hospital. Craig Ginther, certified orthotist, added: “We knew going in we were going to need an RGO (reciprocating gait orthosis); how we were going to get him in it, keep him in it, and what kind of distal components (feet) we were going to need, we would just have to figure out as we went.”

Over the course of several days, the POPS team experimented with their design approach. A collaborative environment prevailed throughout construction of the device, with the entire department assisting and contributing. The resulting device was a combination of orthotic and prosthetic fabrication, a hybrid approach necessary to achieve proper functioning. The RGO framework features a ‘total contact seat’ with straps and metal bars to secure Jesus and keep him positioned upright. A cabling system controls hip joints attached to prosthetic pylons (legs) leading down to wide, platform-style ‘feet’ designed for added stability. When Jesus leans back and to the side while in the device, the cabling system will advance the leg with no weight applied to it (the leg opposite his backward lean). Upon coming forward, Jesus can lean toward the advanced leg, and the cabling system will pull the back leg forward alongside the other. Despite the effort, Jesus’ initial reaction upon seeing the device was less than enthusiastic.

“He didn’t like it at all when he saw it – he didn’t want to touch it or have any part of it,” Elwart recalled. “After a rough start, he finally realized that he could stand independently and interact with the other children around him and be on eye level – it was like a light switched on and he realized what it was for.”

Over several weeks of intensive therapy with the device, Jesus developed an enthusiasm for his newfound independence. With the help of the hospital’s rehabilitation team, Jesus is now able to advance his new legs with assistance. As he grows and develops the muscle technique necessary to ambulate without assistance, POPS team members say his ability to participate in his environment will only increase. For mother Luisa, the sight of her son proudly using a device to walk has already achieved what she thought impossible.

“It’s been a wonderful experience,” Luisa said. “I never thought that they would have been able to make a device where he could walk – even though it’s with assistance now, he’s still able to walk and that’s something I never would have imagined.”

Jesus with the POPS team members

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