When 19-year-old Taylor Haines performs, she tells a beautiful story with her body through dance. She leaps, turns and flips across the stage without missing a beat. It’s not until you look a little closer that you’ll notice there’s more to her story than meets the eye. Taylor was born with birth defect called fibular hemimelia, and she has a prosthetic leg.
“Fibular hemimelia is a congenital birth defect that causes complete or partial absence of the fibular bone, the smaller and thinner bone in the lower leg,” said Dr. Vincent Mosca, chief of foot and limb deformities at Seattle Children’s. “It occurs in about one in 40,000 children. These children also have a shortened and bent tibia, the larger and thicker bone in the lower leg, and in many cases, absence of toes on the affected limb. The thigh bone is also slightly shorter than the other side. All the other body parts are normal.”
The Haines family traveled from their home in Anchorage, Alaska, to Seattle Children’s for treatment where Mosca gave Taylor’s parents two options. They could either preserve her foot by undergoing a multi-stage treatment plan, or they could have her foot amputated. The foot preservation plan would include one or more foot/ankle realignment operations and one or more prolonged leg lengthening procedures. With the foot preservation option, she would have undergone treatment for months or years to lengthen her leg. During that time, she would have been limited in her activities, and at the end of treatment, she would have had a thin leg with multiple scars and a very stiff foot and ankle. With the amputation, she’d wear a prosthesis, but have a full and physically active childhood, and her function would be very close to normal.
It was a decision of form versus function, and one of the hardest decisions of their lives, according to Taylor’s mother.
“The truth is, beauty is in the eye of the beholder,” said Mosca. “I’ve done both procedures, and I give families the right to choose. They are both reasonable options. Together with the families, we sit down and make a decision on the child’s behalf.”
“There was no question,” said Elizabeth Haines, Taylor’s mother. “Function overruled form. I wanted her to have an active life. And so when we decided to move forward, we kept a simple perspective. It was never a question of what would she be able to do, it was how can we help her to do it.”
Before Taylor was 1 years old, the family flew to Seattle Children’s to have Taylor’s foot amputated.
On the move
After the surgery, Taylor was fitted for her first prosthetic leg. She was born into an extremely athletic family. Learning to walk was never a challenge for her, even with a prosthetic leg. By her first birthday she wasn’t only walking, she was also learning to ski.
“When I was little, I was completely oblivious,” said Taylor. “I could do whatever anyone else could. I didn’t think I was any different.”
There was no slowing Taylor down. Even with the amputation it was hard to keep up with her, recounts her mother.
“My family didn’t treat me like I was disabled,” said Taylor. “I don’t think that word applies to me. I remember being interviewed once when I was in the third grade. They kept on calling me disabled during the interview. I looked up at my mom and said, ‘Mom, tell them. Tell them I’m not disabled.’ I couldn’t understand why they were calling me that.”
Taylor remembers moments growing up when she did feel different though. In the fifth grade she was attending a pool party, and everyone else was jumping in the pool without hesitation. Taylor found herself looking down at her prosthetic leg. To get into the pool she needed to take her prosthesis off, and she knew everyone would stare at her.
“We used to ask her, ‘Are you going to watch life go by, or are you going to be in the middle of it?’” said Elizabeth.
For Taylor, the answer was easy. She was going to be in the middle of it. There were times when people would stare at her leg, or she’d be limited by her prosthesis, but she faced every challenge with a positive attitude and an infectious laugh.
“I try not to take myself too seriously,” said Taylor. “There are times when I get sad, but after a second I snap out of it. When I was in high school I wanted to be stylish, and so when everyone else was wearing skinny jeans or high heels that bothered me. I couldn’t fit the skinny jeans around my prosthesis. I had to remember, it’s not that big of a deal.”
A life with many legs
Every year, Taylor needed to travel to Seattle Children’s to be fitted for a new prosthesis.
“We went once a year for 15 years,” said Taylor. “By the time I was 15 years old, I had a closet full of prosthetic legs.”
After the earthquake in Haiti, Taylor donated nearly all of her prosthetics. Her mother helped her send them to survivors who were in need of a prosthetic leg. She decided to keep one: her very first prosthesis.
“My first prosthesis was so cute,” said Taylor. “It was only about a foot tall. I named him Helper.”
As Taylor grew, her prosthesis needed to be adjusted to fit her growing body.
“A prosthetic for a child needs to be durable, lightweight and able to grow with them as they get taller and bigger,” said Peter Yukawa, a member of the Orthotics and Prosthetics team at Seattle Children’s who cared for Taylor. “They have to stand up to the activities kids like to participate in. For Taylor, she was interested in dance, and as she got older she also wanted to wear high heels. Giving her the ability to thrive and participate in the activities she wanted to do was rewarding.”
Taylor said Seattle Children’s will always have a special place in her heart. One of her favorite memories was racing Peter up and down a long hallway in the hospital. It was a fun way to test out her new leg. The race became a yearly tradition.
“She’s always wanted to race me,” said Yukawa. “When she was younger I was able to beat her, but as she got older, she would actually beat me. It was great to watch her grow and get faster, and to watch her become the amazing person she is today.”
Telling a story with dance
For as long as Taylor can remember, she’s loved to dance. Her parents enrolled her in dance classes when she was 9 years old, and it quickly enveloped her life. She found ways to adapt to different dance styles and if she couldn’t perform a certain move, she adjusted the move to make it her own.
“I remember being enthralled by dance,” said Taylor. “I wanted to be a part of it. It’s how I think. I wanted to tell stories with my body, and to express my emotions in dance.”
It was clear that Taylor was born to dance. When she tried out for the University of Wisconsin dance team her freshman year of college, she didn’t tell them about her prosthesis. She made the team before anyone even noticed.
She also recently starred in an international commercial: The Dancer
“I don’t think my prosthesis defines me,” said Taylor. “It has made me stronger, but it’s not who I am. It’s part of me, a detachable part of me.”
Taylor hopes her story will inspire other people, especially those who think because they have a disability they can’t dance.
“Everyone says don’t give up,” said Taylor. “It’s cliché, but it’s true. Do what makes you happy.”
Mosca has been treating children with limb differences for more than 32 years. When he sees children like Taylor following their dreams and performing at such a high level, he describes it simply.
“I’m so incredibly proud.”