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Emmett Paves the Way for Other Patients

Emmett’s days center around superheroes and LEGOS. He likes to think about which book he’ll read at night and which Minecraft creation he can build next.

After all, he’s 6 years old.

What Emmett doesn’t think about is how the medical care he received at Shriners Children’s St. Louis is becoming a model for future patients just like him.

Emmett was born with proximal femoral focal deficiency (PFFD). His parents wouldn’t find a correct diagnosis and treatment plan for years, until they traveled from their home in Springfield, Illinois, to the Gateway City. Eric Gordon, M.D., Shriners Children’s St. Louis orthopedic surgeon and Washington University professor, shared his expertise, guiding the family to solutions.

PFFD is a birth defect that leaves one leg shorter than the other. For most children, mobility becomes an issue. For Emmett, that happened at about his sixth birthday.

“At this point, he was having problems walking around. You can put a lift on the bottom of a child’s shoe, but if it gets more than about 2 to 2.5 inches, it becomes a problem. They start rolling off of it, they can’t do activities they want to. So, we really wanted to go ahead and do a lengthening for Emmett,” explained Gordon.

The only issue: Emmett was 6 years old, not 8, which is the typical baseline age for the use of an Ellipse Nail for limb lengthening. Simply put, his femur wasn’t long enough or mature enough to support the tool.

So, Emmett’s case led Gordon to perform a first for Shriners Children’s St. Louis and the Center for Advanced Pediatric Limb Reconstruction and Lengthening: an internal rod lengthening where the Ellipse Nail is on the outside of the bone – instead of inside the center of the bone. Only a handful of hospitals in the world offer such a procedure.

X-rays of Emmett's leg

“The alternative is to lengthen the kids with an external fixator. Especially for the thigh bone, no one likes to have an external fixator up there. It’s uncomfortable for the kids. It’s awkward to get around and severely limits their motion. It’s a real struggle. So, a lot of the kids who are in this situation – who would have used an external fixator in the past, we can use this technique with the rod placed on the side of the bone but completely inside the thigh. We plan on using it more,” said Gordon.

“He had the nail placed in September. We used a magnet to lengthen – to give him 5 centimeters in his femur. That process finished in October. The nail will stay in until the bone fills back in,” said Daphne, Emmett’s mother.

Before surgery, Emmett’s team at Shriners Children’s St. Louis calculated a 2.5 inch difference between his left leg and his right. Gordon said the lengthening gave him 2 inches back.

Shriners has given us lots of confidence. They have really helped him
Daphne, Emmett's mom

The issue with limb lengthening in a child: Their bodies aren’t finished growing yet. Thus, the length discrepancy returns. In Emmett's case, however, the use of several lengthening treatment plans will allow the left leg to stay at a manageable difference and allow him to continue to be active.

For the time being, Emmett’s lift is shorter and he’s able to be more active.

Daphne said Emmett’s long-term plan includes two more lengthening treatments and a potential third surgery to stunt the growth plate in his right leg to halt growth. Gordon believes that by the time he needs his second lengthening, Emmett’s femur will be long enough that he’ll be able to insert the nail into the center of the bone as he normally does.

Daphne is hopeful that one day Emmett will be able to wear flip flops or even roller skates. His Shriners Children’s St. Louis care team hopes so too!

“He can walk flat-footed at times. It’s strange that the lifts in his shoes now, are all too high. They need to be shortened,” Daphne said as she smiled.

“Shriners has given us a lots of confidence. They have really helped him,” she said.

Emmett is Running Again After Innovative Treatment

By the time Emmett's sixth birthday rolled around, his parents knew the pain was too much. He couldn't run or play like he desired. So, they returned to Shriners Children's St. Louis for his first of, what likely will be three, leg lengthening treatments.
View Transcript

Speaker 1: He's super bubbly. He's really fun. He always has commentary. He always has fun things to say. (bottom third graphic: logo, title reads "Daphne, Emmett's Mom),Last time, last surgery, we were here, he was giving lots of nurses nutrition advice. He was quite popular.

Speaker 2: Unfortunately, he's only six at this point. So when we did this, we like to go ahead and put a rod down through the center of the bone, through here and do a lengthening through that (bottom third graphic: logo, title reads "Dr. Eric Gordon, Orthopedic Surgeon, Shriners Children's St. Louis). But eight is the youngest child that you can do with one of those rods. So we had to use a different technique. What we did is a technique where we put the rod outside the bone here, but underneath the cast. And what we've done is we've put it down outside the bone. We've looped some wire around here and put a screw through the rod up here to hold it against the bone up here. And then down here, we put a screw through the bone here and then two screws around the rod to hold it in place on the lower part.

Speaker 1: Had the nail placed in September. We used a magnet to lengthen, to give him five centimeters to that femur. And that finished in October. It's going to stay in until the bone fills back in where that was separated. And then the screws, like the one that switched today is holding that nail to his femur.

Speaker 2: And you can see a gap in here that's starting to form bone in this area and that's the new bone that's forming as we're lengthening this bone. Well, the alternative is to lengthen the kids with an external fixator. And especially for the thigh bone, nobody really likes having an external fixator on. They're uncomfortable for the kids. They're very awkward to get around (bottom third graphic: logo, title reads "Dr. Eric Gordon, Orthopedic Surgeon, Shriners Children's St. Louis). It's a real struggle, so for a lot of the kids who are in this situation that normally we might have used an external fixator in the past, we can use this technique with a rod down the side, and then we're planning on using it more.

Speaker 1: He can walk flat-footed at times. It's strange that his shoes are [inaudible 00:02:00], they're all too high now. They have to be shortened. And after the surgery, he was non-weight-bearing and in a wheelchair, but now he's in a walker and he just goes.

Speaker 3: Bye, [Emmet 00:00:02:12]. Give me high five.

End screen: Shriners Children's St. Louis. 1-800-237-5055. Logo

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