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Ashlyn Fowler jumps out of her chair, bounds across the room and holds up her stuffed dolphin, Winter.
There’s the bottlenose, the fin ... but no tail fluke.
“She swims with fish, and also she swims with her helper tail,” says Ashlyn of Winter, the bottlenose Atlantic dolphin who stars in the new movie, “Dolphin Tale.”
When Winter was 3 months old, she became tangled in a crab trap line and lost her entire tail fluke and two vertebrae. Today, Winter lives at the Clearwater (Fla.) Marine Aquarium and swims with the assistance of a specially-designed prosthetic tail.
They have that in common. Ashlyn, 4, is wearing a myoelectric arm built by Hanger Prosthetics and Orthotics in Independence. The Lee’s Summit girl’s left arm ends just below the elbow.
Unlike Winter’s, Ashlyn’s limb difference is congenital, meaning her arm did not develop fully in utero, explains her mom, Trisha Whitehead.
“I had several sonograms, including a 4D,” Whitehead said. “None of them showed her limb difference. Now, looking back at the 4D, you see it. But at the time, we had no idea.”
Congenital limb differences are rare – only about 26 newborns per 100,000 live births are affected, according to the National Limb Loss Information Center – and Whitehead didn’t know anyone with a child like Ashlyn.
Online, however, she found Sammy’s Friends, a group for families affected by congenital limb differences, and Born Just Right, the blog of a mid-Missouri family with a daughter about Ashlyn’s age whose left arm ends just above the elbow.
Those resources were invaluable, Whitehead said, as she learned to be an advocate for her daughter. When Ashlyn was 10 months old, the family traveled to Shriners Hospital in St. Louis, where she was fitted with a passive prosthetic arm, which helps infants build strength and muscle tone.
Later, Ashlyn received a body-powered prosthetic arm, also from Shriners, but she “absolutely hated it,” Whitehead said. “Through no fault of Shriners, Ashlyn just refused to wear it. It had a harness that attached around her chest and back, and it was uncomfortable.”
And Whitehead was reluctant to force her daughter to use the arm when there was so much she could do without it.
“She’s very resilient,” said Whitehead. “We haven’t mastered shoe tying, but she’s only 4. She gets dressed by herself, she puts her own socks on, brushes her teeth and climbs like the dickens.”
Ashlyn Fowler jumps out of her chair, bounds across the room and holds up her stuffed dolphin, Winter.
There’s the bottlenose, the fin ... but no tail fluke.
“She swims with fish, and also she swims with her helper tail,” says Ashlyn of Winter, the bottlenose Atlantic dolphin who stars in the new movie, “Dolphin Tale.”
When Winter was 3 months old, she became tangled in a crab trap line and lost her entire tail fluke and two vertebrae. Today, Winter lives at the Clearwater (Fla.) Marine Aquarium and swims with the assistance of a specially-designed prosthetic tail.
They have that in common. Ashlyn, 4, is wearing a myoelectric arm built by Hanger Prosthetics and Orthotics in Independence. The Lee’s Summit girl’s left arm ends just below the elbow.
Unlike Winter’s, Ashlyn’s limb difference is congenital, meaning her arm did not develop fully in utero, explains her mom, Trisha Whitehead.
“I had several sonograms, including a 4D,” Whitehead said. “None of them showed her limb difference. Now, looking back at the 4D, you see it. But at the time, we had no idea.”
Congenital limb differences are rare – only about 26 newborns per 100,000 live births are affected, according to the National Limb Loss Information Center – and Whitehead didn’t know anyone with a child like Ashlyn.
Online, however, she found Sammy’s Friends, a group for families affected by congenital limb differences, and Born Just Right, the blog of a mid-Missouri family with a daughter about Ashlyn’s age whose left arm ends just above the elbow.
Those resources were invaluable, Whitehead said, as she learned to be an advocate for her daughter. When Ashlyn was 10 months old, the family traveled to Shriners Hospital in St. Louis, where she was fitted with a passive prosthetic arm, which helps infants build strength and muscle tone.
Later, Ashlyn received a body-powered prosthetic arm, also from Shriners, but she “absolutely hated it,” Whitehead said. “Through no fault of Shriners, Ashlyn just refused to wear it. It had a harness that attached around her chest and back, and it was uncomfortable.”
And Whitehead was reluctant to force her daughter to use the arm when there was so much she could do without it.
“She’s very resilient,” said Whitehead. “We haven’t mastered shoe tying, but she’s only 4. She gets dressed by herself, she puts her own socks on, brushes her teeth and climbs like the dickens.”
That’s an all-too-common problem with children who have limb differences, one that often encourages parents to delay treatment, said Keith Andrews, the clinician at Hanger who built Ashlyn’s latest artificial limb.
“Ashlyn really started late,” he said. “She’s 4 years old, and ideally she would have started when she was 6 months old. It’s a real struggle to get (kids) to use prosthetics, especially if they can already do everything without one.”
When kids learn to adapt – especially an upper limb difference like Ashlyn’s – they tend to favor one side, said Andrews. That leads to serious health problems down the road, like overdevelopment of muscles on one side of the neck and shoulders and curvature of the spine.
After Winter the dolphin lost her tail, she learned to swim again. But without a tail fluke to give her thrust, she used her entire body to propel herself forward, moving more like a shark than a dolphin. It wasn’t healthy.
That’s why Hanger Vice President Keith Carroll stepped in to help. With marine veterinarian Mike Walsh, Carroll designed a prosthetic tail for Winter. With it, she can swim like a dolphin and prevent further damage to her muscles, but according to the Clearwater Marine Aquarium’s website, training Winter to use the tail is an ongoing process.
It’s the same way with Ashlyn, said Andrews.
“An artificial limb isn’t something you put on and say, ‘This feels good.’ It’s something you tolerate, and it’s getting the patient to accept the prosthetic,” he said. “You have to get the patient to realize the functional benefits – that’s where we’re at with Ashlyn, we’re at that crux.”
The myoelectric arm he built for Ashlyn can be controlled with a switch on the side of the prosthetic, which is what she uses if she’s asked to show off the arm. But it’s meant to be controlled with the muscles she would have used to open her own hand.
Recently, Andrews said Whitehead told him that Ashlyn opened and closed the hand on her own and came rushing in to share what she had done.
“She yelled, ‘Mom, I can open this by myself!’ It’s like riding a bike. She’ll find that point,” Andrews said.
Working with Hanger has been a blessing, said Whitehead, adding that the trip back and forth to Shriners in St. Louis had been too much for the Lee’s Summit family.
She learned about Hanger at the same place Ashlyn learned about Winter – at the Amputee Coalition’s annual conference, which was held in Kansas City in June. There, Ashlyn was able to meet other kids like her for the first time, including the mid-Missouri family whose daughter’s limb difference is similar.
The two families will travel together to Clearwater, Fla., at the end of the month – to meet Winter, of course.
“She’s super excited to show Winter her helper arm,” said Whitehead.
And Andrews is excited, too. Because of Winter, he has an easier time getting kids like Ashlyn to buy into the prosthetic process.
“When I first met Ashlyn, I thought, ‘This is going to be a nightmare. This is a child we’re going to have to hold down and strap into a prosthetic,’” he said. “The dolphin has made a difference in acceptance.”
LEARN MORE
If you’d like to learn more about limb differences, visit the Amputee Coalition, www.amputee-coalition.org.
If you’d like to learn more about Winter the dolphin, visit the Clearwater Marine Aquarium, www.seewinter.com. The movie “Dolphin Tale” is in theaters now.
If you’d like to learn more about prosthetic options for people with limb differences, visit www.hanger.com. There, you can also watch a short feature on the prosthetists who built Winter’s artificial tail.
