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Finding Comfort at Shriners Children's St. Louis

After traveling thousands of miles and enduring several misdiagnoses, Madi's family found Shriners Children's St. Louis

Madi is a third-grader from Clarksville, Tennessee. She loves math, the color pink and swimming. By all accounts, she’s a healthy and happy 9-year-old.

When Madi was born, her mother immediately knew something was wrong. Before Shoney even laid eyes on her baby girl, the operating room fell silent. The medical experts surrounding her were trying to understand what was happening with Madi’s right leg. That medical team and several other subsequent teams misdiagnosed Madi, first with clubfoot and then with tibial torsion. Neither were correct.

Thankfully, by 18 months, Shoney had found an orthopedic specialist on the East Coast who accurately diagnosed and treated Madi. She had tibial hemimelia.

However, Shoney recalls something feeling off. Madi was improving and healing, but not without the stressors of pain medications and confusion from her medical team. She was starting to lean into her mother’s intuition when someone mentioned Shriners Children’s St. Louis.

As they say, the rest is history.

With Shriners, the team humanizes the situation and empathizes what you're going through.
Shoney, Madi's mother

“A night and day difference” is how Shoney described her feelings after their first visit with the limb lengthening and reconstruction team at Shriners Children’s St. Louis.

“I always feel like I know what’s going on when I’m in clinic with Madi. I just felt like I was put at ease here,” explained Shoney. "With Shriners [Children's], the team humanizes the situation and empathizes what you're going through."

Certainly, Shriners Children’s St. Louis’ affiliation with Washington University and St. Louis Children’s Hospital offers patients unparalleled levels of trusted care. However, Madi’s surgeon, Eric Gordon, M.D., believes the secret to the success at Shriners Children’s is actually in the relationships formed.

“I think the kids and the parents often feel like they have joined a large, extended, loving family when they are going through their care here,” Gordon said.

“The biggest thing is the passion of the nursing and physical therapy staff, and the personal way things are done here. Jill Hahn, clinical coordinator, is an incredible resource for the patients with her caring attitude and desire to help the patients and families get through a difficult time. Her teaching leaves families with a feeling that problems are anticipated and easily dealt with, and she seems to always be available with advice and a hand to hold,” he explained.

The journey to Shriners Children’s St. Louis was a long one. While Shoney wishes she’d found this team sooner, she’s grateful to have an orthopedic home for Madi and to see, time after time, her daughter progress.

“It’s been a journey. Madison is the perfect kid to go through something like this. Through it all, Madison has never lost her spark,” said Shoney.

Shoney has bright dreams for her daughter. She said it's Madi's passion for "giving back" that will drive her into the future.

Finally Finding an Orthopedic Home

After years of misdiagnoses, Madi's family finally found comfort in the care offered at Shriners Children's St. Louis.

Baby Madi

Since birth, Madi's family knew she'd need orthopedic help.

Madi as baby in clinic

Madi's family seeks answers.

Madi and her mother before surgery

Madi and her mother, Shoney, prepare for surgery.

Madi outside in front of Silent Messenger statue

A stop by the Silent Messenger statue during leg lengthening treatment.

Madi picking strawberries

Madi picks strawberries during leg lengthening treatment.

Madi outside

Madi contemplates her bright future.

Madison and her mother, Shoney

Madi and her mother smile in clinic.

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