Skyler Auker-Hicks leads a life that’s pretty typical for a 17-year-old: she loves hanging out with her friends; she a good student whose favorite classes are physical education, choir, and history; and she’s looking forward to going to college and being more independent.
Given the circumstances that Skyler has dealt with in her young life, it’s pretty amazing that the Frankton Junior - Senior High School junior has ended up leading a typical 17-year-old’s life.
Skyler was born with a lipomyelomeningocele, a rare form of spina bifida. The lipomyelomeningocele is a fatty mass under the skin in the lower spine area that can invade the spinal cord. The condition left Skyler with partial paralysis, orthopedic issues, developmental issues, and neurogenic bladder, requiring that she use a catheter to empty her bladder.
Skyler’s condition required care that was difficult for her family to provide — she went into foster care when she was 4 years old and by the time she was 9, had lived in six different foster homes.
“It was hard,” says Skyler. “I would make a lot of friends and get close to people, then I would have to pack up and move.”
However, her move to another foster home when she was 9 became her last.
When Terri and Frank Hicks welcomed Skyler into their Frankton home, she had just been discharged from Riley at IU Health after undergoing an appendicovesicostomy. Mark Cain, MD, chief of urology, performed the procedure, which constructed a channel from Skyler’s abdomen to her bladder. The channel allowed Skyler to have access to her bladder through her navel, making catheterization much easier for her to do herself.
Terri says they knew about Skyler’s condition and needs; even though they had never cared for a special needs child, they wanted to make her a part of their family.
“We’d raised four healthy sons, but had it in our hearts to be foster parents and help kids,” says Terri.
When Skyler was 11, she learned she wouldn’t have to worry about packing up and making another move — Terri and Frank adopted her. Since then, they’ve opened their hearts and home to more special needs children, adopting Nick and Chris, two brothers with traumatic brain injuries, and serving as foster parents to Nicole, who has cerebral palsy and is blind.
Skyler finds a medical family too
The other constant in Skyler’s life has been her medical team at the Spina Bifida Clinic at Riley at IU Health. Since she was born, Skyler has been a regular at the clinic, where a multidisciplinary team — developmental pediatrics, orthopedics, urology, neurosurgery, therapy, dietary, wound care, and social work — provides her care, in one place, in one visit.
They’ve treated kidney and bladder issues that developed as a result of her condition and frequent urinary tract infections, as well as performed three ankle surgeries and a knee surgery. In addition, Skyler has had three surgeries to release her spinal cord, which became tethered to the fatty mass near the base of her spine. A tethered cord can lead to nerve damage.
“Dr. Cain and most of the people at the clinic have known me since I was a baby,” says Skyler.
Terri adds, “As a parent, I depend on them quite a bit. We feel like we’re part of the team.”
Skyler says Shelly King, a nurse practitioner in the urology department, is a member of the team she sees most regularly and is someone she considers family.
“She’s like an aunt,” says Skyler. “She treats me with a lot of respect. It’s hard sometimes because there are medical things I don’t understand and she explains whatever I need her to.”
Because developmental issues can make it challenging for Skyler to keep a schedule and follow through on tasks, there have been times she hasn’t managed her catheterization the way she should. This leads to frequent urinary tract infections. Skyler says when her dedication to her care slips, King is patient with her.
“If I’ve done something wrong, she’s never yelled at me,” says Skyler. “Instead, she explains what will happen if I don’t do what I’m supposed to. She helps me figure out how to mange challenges in my daliy life.”
Skyler won’t have to worry about growing out of that kind of personal care. King says Riley at IU Health is one of the few centers in the nation with a transition team that makes it possible for spina bifida patients to seamlessly transition under the guidance of Dr, Rosalia Misseri to the Adult Spina Bifida Clinic, which is part of the urology department.
“When they graduate from the Spina Bifida Clinic at 18, they literally come across the hall,” says King. “We have urologists who specialize in caring for adult patients with spina bifida.”
Skyler hasn’t let her limitations get in the way of being a normal teenager — like most teens, she and her mom butt heads at times and she’s ready for more independence than her mom is ready to give. Skyler says her biggest issue to deal with has been the way other people see her.
“They see the disability, they see weakness,” she says. “There’s more to me than just a disability. I’m stronger than they think.”
Skyler credits her friends and family for giving her support when she needs it, reminding her to remember her strengths.
“My friends and family feed me emotionally,” she says. “My grades are good, I read at a high level, I have the ability to learn how to do things. I have the will to work for what I want and if I want something, I’m going to make it happen.”