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Utah County child amputees adapt quickly to their new normal

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A child’s rapid growth means parts of prosthetic limbs have to be replaced more frequently than with adults.

An adult would have a custom socket replaced every three to five years. For children, the socket is replaced about once a year, according to Lane Ferrin, a prosthetist at Northwest Orthotics and Prosthetics in Provo.

That can get costly quickly, even with insurance. Ferrin said most insurance companies cover 80 to 90 percent of the cost for a prosthetic limb. Prices are about the same for children and adults, and without insurance a limb costs $9,000 to $10,000.

That means most children with amputations go to the Shriners Hospitals for Children-Salt Lake City for care. The nonprofit hospital treats children whether or not their families can pay.

Insurance doesn’t cover the cost of a waterproof shower prosthetic, which can be an additional $2,000.

Waiting too long for a new limb can be detrimental. Ferrin said if a child has gotten used to a leg that’s too short he has to gradually increase the height of a new limb so the body isn’t put into shock or experience pain.

Ferrin has to show insurance companies that a new limb is medically necessary for a patient. That’s done through measurements showing significant changes that can’t be accommodated by adjusting the current limb, or by showing the current limb has been adjusted or repaired so many times it’s no longer safe.

He said children tend to put more wear and tear on their prosthetic limbs than adults. They also adapt faster to a prosthetic limb than adults.

“They have already adapted quite well to having a missing limb,” Ferrin said. “They are hopping everywhere.”

It takes about a year for adults to get back to normal activity. It can be a challenge to return to a normal gait because the amputee can’t feel the prosthetic limb.

He spends his first visit with a patient educating them and giving them hope. But it’s the parents, not the children, that need reassurance.

“The kids are like, ‘When do I get my robot leg?’” Ferrin said.

Kids are more worried about what color their prosthetic limb will be and don’t want it to be ugly.

“Children can walk on anything,” Ferrin said. “You give them something that stays on and allows them to touch the ground and they’ll walk on it.”

He’s seen a change in the perception of amputees as people with unique prosthetics have become more common in the media.

Ferrin said he used to make a cover hiding the hardware in a prosthetic limb on about 50 percent of the legs he made. That’s dropped down to 10 percent.

Shriners Hospitals for Children-Salt Lake City Pediatric Orthotic and Prosthetic Services made about 200 limbs last year, according to James Knackstedt, the director of the Salt Lake City POPS program.

Legs accounted for the majority of the prosthetic limbs made.

Nationwide, Knackstedt said POPS made 2,500 pediatric devices at 17 locations.

The Salt Lake City location treats children from Utah, Wyoming and Idaho and has seen patients from as far as Mexico and Costa Rica.

He sees a lot of children who come to the hospital who were born without a limb. The hospital also sees child amputees who lost a limb from trauma such as a lawn mower or car accident.

He’s seen a nationwide increase of how many amputees Shriners Hospitals for Children treat, which he attributes to increased awareness.

The hospital’s mission means it doesn’t have to abide by insurance limits on prosthetic devices.

“At the end of the day we are able to do whatever we feel is the right thing for the patient,” Knackstedt said. “That’s the best part of it for me.”

A new amputee can expect to have a socket replaced sooner rather than later due to their residual limb getting smaller after the amputation.

Costs can vary.

“If you have the money, you can spend $75,000 on just the hand,” Knackstedt said.

Technological advances mean prosthetic limbs are more durable than ever, and amputees have been excited about blade-like prosthetic legs popularized after double amputee Oscar Pistorius competed in the 2012 Summer Olympics. Knackstedt said those legs are great for running in straight lines, but aren’t the best for standing still or keeping someone balanced when they’re playing a sport.

The increased attention on unique-looking prosthetic limbs means Knackstedt has seen children abandoning older styles of prosthetic limbs made to match their skin tone for bright colors and patterns.

“They aren’t as self-conscious about it,” Knackstedt said.

‘Brailey bug’

Brailey Partida’s family celebrated every milestone, whether it was the first time she used a walker or her first time back on a swing.

In the two years since Brailey lost her leg below the knee in a lawn mower accident, the Pleasant Grove family has learned that they win as Brailey wins.

“In the beginning, you don’t think you’d be excited, but you’re excited for everything,” said Jacob Partida, Brailey’s father.

When it comes to child amputees, 6-year-old Brailey’s story is fairly common. The most common cause of amputations in adults is vascular disease, followed by trauma and cancer, according to information from the Amputee Coalition.

For children, the most common cause of pediatric amputations is lawn mower accidents.

Brailey is all about the ladybugs. Her nickname is “Brailey bug,” her bedroom is decorated with ladybugs and she can swiftly hop around her home — whether on one leg or two.

She can quickly remove her prosthetic leg and hop on a trampoline without it. She was so good at hopping around the house at first that she was resistant to slow herself down with a second leg.

While her parents thought her life would be ruined after the accident, Brailey never seemed to act like anything would be different.

“She was never really sad,” Jacob Partida said. “She never says ‘I can’t.’ It is ‘How can I?’”

Brailey spent 28 days at Primary Children’s Hospital following the accident. She underwent 11 surgeries, most of which came within her first two weeks of being in the hospital.

She got her first prosthetic leg — decorated with ladybugs — 66 days after the accident, just a few days before her fifth birthday.

Those first few months were about learning to do things without two legs and learning to walk using a prosthetic limb.

“She was apprehensive to walk on it, to trust it,” said Teri Partida, Brailey’s mother.

She’s now on her fourth leg, and designs have included ladybugs, Shopkins and butterflies.

Her next leg will feature The Flash, because, as Brailey explains, “He’s fast.”

The toes on the prosthetic foot are painted with pink sparkles. Her current leg is made of carbon fiber and lighter than her previous ones, which allows her to run and walk more effortlessly.

Due to her rapid growth, Brailey gets a new leg every six to eight months. That’ll slow down in about six years.

Brailey plays soccer and she’ll enter the first grade in the fall. Her parents speak to her school to talk about accomodations Brailey might need, like a taller desk to stand at.

She’s done well in school. Her mother, Teri Partida, said Brailey is a great reader with lots of friends.

“She said the kids have been very nice to her,” Teri Partida said. “They all want to be her friend because she has a robot leg.”

They’ve received overwhelming support since the accident. The Partidas run into people when they’re out who recognize and remember their daughter, and Teri Partida has connected with other parents whose children have been injured in lawn mower accidents.

Brailey’s parents said they’ve learned not to take things for granted and to keep their kids safe. Jacob Partida has stopped people to talk to them about lawn mower safety and the Partidas volunteer to watch neighbors’ children when they’re doing yard work.

“You don’t ever fathom your life would be turned upside down like this in one second,” Jacob Partida said.

Choosing to amputate

Whenever Kristin Reichert would forget to take prenatal vitamins her husband would joke that their daughter was going to come out missing an arm.

Moments after their daughter Siena was born he pointed out their daughter only had four toes on one foot.

“I just totally thought that was part of the prenatals joke,” Reichert said.

It wasn’t. Siena was born with fibular hemimelia, which is associated with limb length discrepancy and foot deformities. She was born with one leg shorter than the other, had a club foot on the shorter leg and had only four toes on that foot.

After visiting multiple doctors, they faced the decision of having multiple surgeries done on Siena or amputation.

Siena was 3-years-old when her foot was amputated.

They wanted the transition to have as little trauma for Siena as possible. They prepared her by showing her videos of Amy Purdy, a Paralympic snowboarder and double amputee. Siena got excited by watching videos of amputees and told her parents she was going to be able to run faster after the surgery.

The Reicherts also wrote letters for Siena to read when she’s older about why they chose amputation.

Siena was doing flips, cartwheels and was dancing three days after the amputation, and wore out her cast running to the point the bottom had to be duct taped.

She received her first leg from the Shriners Hospitals for Children about two months after her amputation.

“She adjusted super well,” Reichert said. “I don’t know if that’s the norm, but she has done awesome.”

Siena is now a 7-year-old who has a shelf full of about eight prosthetic feet she’s gone through. Her prosthetic includes a leg that she puts her residual limb into and is attached to a prosthetic foot.

Her current leg is decorated by Brigham Young University fabric. Her next leg will have mermaids on it.

Her favorite includes two legs decorated with an ice cream cone fabric because, as Siena explained, she wants to eat it.

Her parents plan to make a quilt from the fabrics used to decorate Siena’s prosthetic limbs that they’ll give to her when she goes to college.

Siena outgrew seven legs in the first two years after her amputation. Her two most recent prosthetic legs lasted six months.

She wears out the knees on them because she used it whenever she falls or when she needs to climb.

Siena loves watching Amy Purdy’s videos from when she was on “Dancing With the Stars.” Siena also plays tennis and does gymnastics. Prosthetic feet don’t bend at the ankle, which means amputees can’t wear high heels. It also means gymnastics can be difficult.

“She just finds out a different way to do it,” Reichert said.

Reichert speaks to Siena’s teachers before the start of the school year and will briefly speak to her daughter’s class to let them know about the leg and let the students ask questions.

“Some of her friends call it her Barbie foot,” Reichert said.

The leg can lead to funny moments when a substitute teacher sees the leg fall off at school or when a leg goes down a slide without a child.

For now, the Lehi family goes up to Salt Lake City to the Shriners Hospitals for Children to get Siena’s prosthetic limbs.

But they have concerns about when Siena becomes an adult and ages out of the program.

They hope to find a way to pay for her legs until she turns 25 and has a career.

“I don’t’ even know how she could do that in college,” Reichert said.

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