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Molly Explores her World Independently

A diagnosis of a rare condition led her family to Shriners Children’s

After taking her first steps, 3-year-old Molly is dancing, jumping, and exploring her new abilities.

When Deborah and Chris learned that their unborn daughter was diagnosed with arthrogryposis multiplex congenita (AMC), a rare orthopedic condition, they weren’t sure what it meant. “We were told from other doctors that there wasn’t much anyone could do,” said Chris, Molly’s dad. “After we met with providers at Shriners Children’s Portland, we had a much more positive outlook."

AMC consists of tightened joints, muscles, and tendons and affects approximately one in 3,000 individuals in the United States. The condition can appear in hundreds of different ways, ranging in severity, and typically includes visual cues such as clenched fists or club feet.

In Molly’s particular case of AMC, she was born with club feet, causing both of her feet to turn inward and upward. She also had dislocated knees, a dislocated hip, and muscle weakness in her legs. If left untreated, Molly would never be able to walk or sit comfortably in a chair.

At 6 days old, Molly had her first appointment at Shriners Children’s Portland with Ellen Raney, M.D. Along with her care team and Molly’s parents, Dr. Raney set out to help Molly gain as much independence as possible and enjoy a happy childhood. In order to accomplish that, the short-term goal was to correct the positioning of her feet and knees which would allow them to bend and eventually allow her to comfortably rest in a seated position. Serial casting began immediately.

Their first appointment was scheduled on an arthrogryposis specialty clinic day where Molly and her parents met other patients in the hallway with her same condition. “We met patients who were zipping around in wheelchairs full of life and energy," said Chris. "Seeing others who were doing so well made me feel a lot more comfortable and optimistic about how things would go."

Specialty clinic programs at Shriners Children’s provide patients with incredibly focused comprehensive care for complex conditions, including AMC. This interdisciplinary program allows specialists in various disciplines to assess the nuances of each case and collaborate to develop treatment plans. This collaboration ultimately results in the most well-rounded, thorough and comprehensive care for each patient

The goal in serial casting Molly's feet was preventing the need for complex surgeries later in life. In Molly’s case, serial casting was difficult because typically a bent joint is needed to ensure the cast doesn’t slide off. Due to her dislocated knees, this wasn’t possible for Molly. As a result, Molly’s family visited Shriners Children’s Portland more frequently than most children to get new casts.

“We succeeded in preventing large scale surgeries for Molly – the serial casting corrected the positioning of feet and her dislocated knees,” said Dr. Raney. “This is incredibly positive news for Molly’s future, and I really can’t say enough about the dedication of her family to keep coming in for new casts and staying centered throughout it all.”

After four surgeries, numerous rounds of serial casting to correct the positioning of her feet, and spica casting (a cast that includes one or both legs as well as the waist) to foster healing after hip surgery, Molly has gained the independence that her medical team was striving for. Molly, now 3-years-old, has been walking independently for almost a year.

“Watching her walk into her first appointment at Shriners Children's after she started walking – that, to me, was a good feeling,” said Chris. “A ‘check this out’ kind of moment!”

Not only is she walking, but Molly is a ballerina and gymnast now! Since her treatment, she is now able to bend her knees to 90 degrees and play easily with her friends in preschool.

“Molly loves showing off how much she can bend her knees – she’ll do little squats to show everybody and she’ll say ‘Look my knee bends!’” said Deborah. “She’s excited to learn how to jump, and she’s started to join her brother and sister on the trampoline. Molly may do certain things her own way, but she finds a way to do them - there’s little that she can’t do.”

Molly may do certain things her own way, but she finds a way to do them - there’s little that she can’t do.
Deborah, Shriners Children's Portland

Her medical care continues at Shriners Children’s in the physical therapy department where she’s learning how to ride a tricycle. She frequently visits Pediatric Orthotic and Prosthetic Services at Shriners Children’s Portland for orthotic devices which she wears 23 hours per day.

“Molly is progressing fabulously,” said Dr. Raney. “She’s a born problem-solver! As a 3-year-old, she wants to explore her world. Now, she’s able to explore the world a lot better.”

“Shriners Children’s Portland really doesn’t feel like a hospital, it feels like a community,” said Deborah. “In a world where you feel like resources are limited, Shriners Children's has the answers. The individualized treatment that Dr. Raney has provided is not just a one-size-fits-all approach – that is what has allowed Molly to come as far as she has. And still, after all of the medical procedures she’s had, Molly still loves going to her appointments at Shriners Children’s – it’s never a battle.”

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