Julie Gives Back Through Girl Scout Project
Eighty hours of hard work is the icing on the cake for Julie. She’s spent an entire childhood serving her community through the Girl Scouts.
Now, as a high school freshman, she’s working toward her Gold Award, the highest honor a Girl Scout can earn.
Julie is a bright 14-year-old at Timberland High School. Her sights are set on the future: a high school career that will transition into college classes and part-time employment even before that. So, to ensure she could finish with ease and still have time for everything else, it was vital Julie start working on her Gold Award project as soon as possible.
“Back in middle school, before I could earn this award, I knew I wanted to do something for Shriners,” Julie explained.
To put it simply, her project has heart and there’s a good reason why.
I thought I’d never wear high heel shoes, but now I have boots that are one inch off the ground!
Julie is a Shriners Children’s St. Louis patient. Her mom, Mary, says her OBGYN noticed something out of the ordinary at her 20-week ultrasound appointment. They assumed at that point, that perhaps Julie’s left leg was broken in utero. However, once she was born, Mary and her doctors knew the left leg wasn’t broken, it was shorter. Julie was born with leg length discrepancy.
“We were recommended to see Dr. Gordon at Shriners. Julie was about 4-years-old. He created a treatment plan that included three surgeries (one on her lower leg and two on her femur) starting when she was 8-years-old,” said Mary.
So, they waited until about the time of her 8th birthday and came in for what the team calls a “familiarity visit”.
“The lengthening and straightening process requires a great deal of commitment and responsibility from the entire family. The familiarity visit ensures that everyone is prepared and ready for the process. The patient and their family will attend a pre-operation teaching class to help prepare them for surgery, and they watch a movie to learn about the lengthening process and pin care. The patient and family will also meet with a physical therapist who will demonstrate and explain the exercises required after the surgery; family services and recreational therapy,” explained Jill Hahn, clinical coordinator for limb reconstruction and lengthening at Shriners Children’s St. Louis.
As luck would have it, Julie’s surgery was one of the first scheduled in the new hospital location off of I-64.
“You have some nervousness or anxiousness, but I felt like having everything under one roof – physical therapy, prosthetics and orthotics, the doctor, X-rays – it made us feel more comfortable. We knew we could get all the care she needed in one place without having to travel to five different places for five different appointments,” said Mary.
During her first surgery, Julie had an external fixator, or Taylor frame, surgically placed on the lower part of her left leg.
“The Taylor frame is a circular fixator composed of metal rings and six struts. It is connected to the bone with thin wires and thick pins. The computer-generated ring positions are based on measurements taken from X-rays and clinical examinations. The computer then generates a schedule of daily strut settings. The struts are turned daily by the patient’s parent or guardian to straighten or lengthen the bone,” explained Eric Gordon, M.D., pediatric orthopedic surgeon at Shriners Children’s St. Louis and Washington University.
Once the fixator is in position, patients must participate in physical therapy at home twice a day, in addition to visiting a physical therapist in person three times a week.
“Patients are seen by physical therapy for stretching, strengthening exercises and ambulation training. Therapy is very important to maintain range of motion and strength. In terms of an external fixator, walking, swimming and staying active is very important to simulate new bone formation,” said Gordon.
“You really have to do the physical therapy in order to be successful. I wanted the best for Julie. So, I wanted to bring her here to Shriners Children's because the therapists here have dealt with the Taylor frame,” said Mary.
By 2018, Julie was ready for her second and third lengthening surgeries. The second treatment plan included disrupting the growth plate in her right leg as to stop the leg from growing and allow the left leg to catch up.
“The growth plate is a cartilage area in the upper and lower parts of the bone. What we do is drill and scrape the growth plate in order to create enough damage for it to no longer be functional,” explained Gordon.
Then, Gordon placed an Ellipse nail in her left femur. The nail encases a magnet that is attached to a series of rotors. Those rotors turn when the device communicates with an external magnet – causing the bone to lengthen.
“It wasn’t easy. You go into it assuming it’s going to be easier than the Taylor frame because nothing is outside of the body. It was different but it was still really hard,” said Mary.
It wasn’t easy and the team knew she’d need to do the same surgery/course of treatment twice to achieve even legs. Gordon said Julie had true courage to endure a total of three lengthening treatment plans.
“The Ellipse nail technology has definitely changed the game for our limb lengthening patients. There are no pin sites for the patients and families to deal with which makes physical therapy and the lengthening process much easier,” said Gordon.
In addition, treatments that include an Ellipse nail typically require less pain medicines than treatments that include an external fixator.
“I thought I’d never wear high heel shoes but now I have boots that are one inch off the ground! I have multiple pairs of shoes and I can walk around just fine,” Julie said.
Back in middle school, before I could earn this award, I knew I wanted to do something for Shriners.
According to Julie, the impact Shriners Children’s St. Louis made on her life has been enormous. Now, she’s showing her gratitude through her Girl Scout Gold Award project. Julie is writing a book about her experience, which she hopes to share with future Shriners Children’s patients.
“The goal of the book is to provide people information on what the surgery is all about, to help people be prepared,” explained Julie.
Plus, she’s creating inspirational sayings, crafted from vinyl, to hang on the walls of the clinic. One of those quotes reads “Believe in yourself and anything is possible.”
In total, the project should take Julie at least 80 hours. Julie says she’s about halfway there.
One of the Gold Award project requirements is to ensure the effort has impact for years to come. The main character in Julie’s book has limb length discrepancy – something Julie says has been hard to find in all her years as a student. Her book will help those with limb length discrepancy feel seen and understood. That’s an impact she knows will shine for years to come.
“I’m really exciting to put forward a character who looks like me,” said Julie.
“I think patients and their families will really enjoy Julie’s book. I believe anytime patients and families can hear about someone else’s experience with the treatment, it always helps them be more prepared for what's coming their way,” said Hahn.