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news News Wednesday, January 31, 2018 Wednesday, January 31, 2018 12:57 PM - Wednesday, January 31, 2018 12:57 PM

Defying the odds: a clubfoot story

Shelby wasn’t supposed to walk, now she walks, runs, jumps and skips

Defying the odds: a clubfoot story

Rachel Davenport was excited as she went in for her 20-week checkup. She was about to discover the gender of her first child. But once the ultrasound was underway, her smile quickly faded as the technician performing the ultrasound became visibly upset. Rachel soon learned her baby had clubbed feet, a condition that if left untreated can result in an inability to walk to due to a deformity in the ankle joint. In addition to this shocking news, the technician further explained that Rachel was having a baby girl, which was especially concerning as the anomaly is more common in boys. As Rachel’s heart raced with increasingly concerning news, nothing prepared her for the next blow, which was that her baby had a cyst on the back of her neck. This turned out to be the beginning of visits to specialist after specialist, all telling her the baby would likely not survive, with less than a 5 percent chance that she would. They were preparing her to deliver a stillbirth and recommended she not continue the pregnancy. Despite the hopeless council from these doctors, she decided to proceed with her pregnancy.

Luckily Rachel’s neighbors recommended she call Shriners Hospitals for Children — Salt Lake City. Their child had cerebral palsy and had had multiple successful surgeries there. Rachel was quick to take their advice and was able to secure an appointment at Shriners Hospital shortly after Shelby was born, very much alive and with club feet.

Shelby as a babyWhen Rachel saw her precious new baby, she was filled with fear. Shelby’s club feet were so severe, her toes pointed in and up toward her head. Rachel didn’t know if her baby would ever be able to walk, or if she’d be in pain for the rest of her life. She also knew the cyst on her neck presented multiple spine issues, and none of the doctors she had spoken to so far had any answers.

When she came into Shriners Hospitals for Children — Salt Lake City for her first appointment, she was met with a compassionate and knowledgeable Theresa Hennessey, M.D. Dr. Hennessey was confident she could help Shelby, and suggested immediate treatment with the least invasive methods first, starting with serial casting to treat Shelby’s feet. Dr. Hennessey was patient and kind. Rachel remembers crying every week at the casting appointment, hoping the best for her baby. Right about when Shelby hit her first birthday, she was again assessed. Her very difficult, stiff and resistant club feet were still not lined up correctly and Dr. Hennessey recommended surgery. Six months later, Rachel brought her 18-month-old to the hospital for surgery. The anesthesiologists were attentive and cautious with Shelby’s breathing and swallowing difficulties. “I just knew Shelby was in the best hands,” said Rachel. “And I knew Dr. Hennessey would not give up on her.” It was not easy for Rachel to see her baby go through surgery, but the staff helped her feel reassured and provided a bed large enough so she could hold her baby all night after each surgery.

After eight weeks of casts following the surgery, the day finally came when the casts came off and she was fitted with braces. When they got home that day, Rachel couldn’t believe her eyes when, for the first time, Shelby stood up without help and didn’t have any pain. “I cannot express the joy I felt to see her stand! And ever since then it has been incredible to see her achieve each milestone.” Rachel sees Shelby work hard for things many of us take for granted such as going up and down stairs or climbing into a chair. But she gets better at it every day. And now at 5 years old, she does more than just walk – she jumps, skips and swims! “My favorite thing is when I told her preschool teachers about her shortcomings –they said they would not have known. I know now she can achieve anything she puts her mind to!”

Dr. Hennessey calls Shelby “one tough little lady, even unstoppable!” Noting that from her very first cast, she was full of determination and spunk. “Taking care of Shelby is challenging, but also the source of so much joy.” Initially, Shelby’s extreme case was a mystery, but she recently received the diagnosis of Escobar syndrome which has helped inform future treatment options.  “Shelby had really, really difficult feet to correct some of the most difficult I have treated. Importantly, it is now extremely rare that we do surgery on club feet; however, when surgery is needed, it is much more common in children with genetic syndromes that result in abnormal muscle and soft tissues.”

Shelby gets occupational and physical therapy every month at Shriners Hospitals for Children — Salt Lake City and keeps reaching new milestones like riding a bike with pedal straps and “fat wheels” provided by the hospital that easily attached to her bike. To Rachel, bringing Shelby to Shriners Hospital feels like a second home. Everyone from the security guard to her physical therapist knows her and is genuinely excited when she arrives. Shelby may need more surgeries as she grows but Rachel feels ready to continue this journey because she knows she’s in good hands with the best care and that the staff wants the best quality of life for her baby. “We trust Dr. Hennessey and all of the staff. They are truly angels that have made our dreams come true!”

 

 Shelby and her mom

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