Meet Hayden
Resiliency: A Hawai‘i Island Family Manages a Rare Condition
Earl and Nicole knew their first-born would be named “Hayden.” What they didn’t know was how dramatically their lives would change during her gestation and adolescence.
The couple knew something was wrong when an ultrasound tech repeatedly scanned Hayden’s legs late in their pregnancy. Concerned, they flew from their home in Waikoloa to Honolulu for a specialized 4D ultrasound, which revealed that one of her legs were bent, missing a bone and shorter than the other. That revelation took an emotional toll on the couple, but being medical professionals, they decided to channel all of their energy into finding a diagnosis and ensure their daughter’s well-being. Their research pointed to one thing – a rare condition called fibular hemimelia.
Earl contacted Shriners Hospitals for Children® – Honolulu for a consultation. “The Shriners intake specialist was awesome and she told me she would help no matter what,” Earl remembered. Six months after Hayden was born, the family came for their first appointment. “The intake specialist was there to greet us, held Hayden as if she knew her entire life and then proceeded to hand her to Dr. (Jonathan) Pellett,” explained Nicole, somewhat incredulously. Together, they created a plan for Hayden’s care where she could eventually make her own choices as she grew up.
Hayden underwent her first surgery at 3-years-old, where a special frame was fitted around her leg with adjustments to help lengthen her leg bone. While daily rehab and the pain of adjustments were extremely hard for her, Hayden’s perseverance shone through as she was standing and walking quicker than anticipated. By the time she was eight, she was making her own choices for her care, coaching other patients, and continuing to receive physical therapy and custom orthotics from her Shriners Hospital ‘ohana. “Aunty Jo (orthotics assistant) and Uncle Richard (orthotics manager) are really nice and they try to create my perfect leg everytime,” said Hayden. As the orthotic allows her to walk normally but appears strange to some, Hayden’s maturity serves her well. “If people ask me about it nicely, I tell them all about it,” she said, casually.
Now 10 years old, Hayden chose to have another surgery, this time to slow the growth of her normal leg to allow her shorter leg to catch up. That hasn’t stopped her from doing the things she loves like biking, swimming, drawing, gaming, tennis and dancing. Said Earl, “It takes a special mind to work in a children’s hospital and want to make the lives of keiki better. What Shriners has done for my baby…it’s a calling.”
