Owen Cole: A Kid Just Being a Kid

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By Tara McMeekin
Owen on rock climbing wall

Photographs courtesty of Nickie Cole

When you meet five-year-old Owen Cole, his prosthesis is not the first thing you notice. Instead you notice his big blue eyes, blond hair, infectious smile, and tenacity. Owen's smile is just part of his upbeat attitude. The credit for that can be given to his family, including his mom and dad, Nickie and Jason Cole. And if you ask him who his best friend is, he'll quickly tell you it's his older brother, Ryan.

Within two weeks of Owen's 2010 birth, it became apparent that his left leg was severely bent, Nickie recalls, and his physicians began looking for the cause. An orthopedic surgeon at Children's Hospital Colorado, Aurora, determined that he had neurofibromatosis type 1 (NF1). NF is a genetic disruption of cell growth within the nervous system that can cause tumors to form on nerve tissue throughout the body, and can also affect the development of non-nervous-system tissue, bones, and skin. The most common nerve-associated tumors in NF1 are tumors of the peripheral nerves, according to the National Institute of Health's National Institute of Neurological Disorders and Stroke (NINDS).

NF1 affects about one in every 3,000 people in the United States, and the incidence of a child being definitively diagnosed in infancy, as Owen was, is rare, says NINDS, because many symptoms are age dependent. Although a majority of patients with NF are diagnosed based on the occurrence of tumors, Owen had other signs of NF, including a larger-than-average head and café-au-lait spots on his skin.

Complications and a Difficult Decision

In Owen's case, physicians linked the NF1 affecting his left leg to congenital pseudarthrosis, which makes broken bones difficult to heal. So when Owen suffered a break of his tibia at seven months old and then his fibula a month later, it was time for his family to make a difficult decision.

"By ten months old, after months in a cast with no sign of healing, he underwent a below-the-knee amputation," Nickie recalls. "We made the choice, and we hope he forgives us." The decision to amputate did not come easy, Nickie says. The alternative would have been placing plates in Owen's leg as it grew to try to heal and straighten the bone, which would mean repeated bone grafts and surgeries.

"Jason and I did a lot of research about what the two options meant, and we kept coming across young patients that had gone through surgery after surgery. And when they got to an age where it was in their control, [they] ultimately made the choice for amputation, so we made the difficult decision of choosing that for him," she recalls. "We didn't want him in and out of hospitals, and even if they could have saved his leg, it would have been weak." Nickie says she and her husband also came across many cases where amputation procedures that were eventually inevitable had been complicated by previous efforts to preserve a limb.

Then the Coles met a boy named Ben, who was five or six years old, at a clinic for people with limb loss. When they saw Ben running and playing on his prosthesis, Nickie says, the answer became obvious. "He was so thrilled to have this leg because he could run," she says. "That was our main concern for Owen-for him to have a strong leg that would allow him to lead as normal of a life as possible."

Although Jason and Nickie say they still often question their decision to have Owen's leg amputated, those worries fade into the background when they watch Owen play in the backyard with his brother and his golden retriever puppy, Cody.

Since the amputation, Owen has undergone a revision surgery to address the growing bone penetrating the muscle of his residual limb and eliminate the associated pain. He also had a tumor removed, which physicians believe was an isolated incident related to the amputation itself rather than an indication of potential future tumors associated with his NF1 diagnosis. More revision surgeries will be needed periodically as Owen grows.

While it can be difficult to find the bright side of a limb amputation, Owen's physician said Owen was fortunate to be a candidate for a transtibial rather than a transfemoral amputation, Nickie says, because the knee is among the most difficult parts of the body to replicate and contains all of the leg's growth hormones.

Currently, Owen uses an ALPS 3mm liner with a lanyard suspension prosthesis and a College Park Truper foot due to build height restrictions. The prosthetic solution will be modified as he grows.

"We are in the process of making him a new leg with a very similar setup, but with a different foot made for higher activity as he has outgrown his current prosthesis," says Jeffrey Talen, CPO, Hanger Clinic, Parker, Colorado.

Cole family

Owen with his mom, dad, and brother.

On the wish list for Jason and Nickie is a swimming leg for Owen, who loves going to the pool.

"We have frustrations, but we're very grateful for wonderful doctors, [and] especially Jeff Talen," Nickie says.

That admiration is mutual.

"Owen has overcome more things than any kid should have to experience," Talen says. "His whole family is amazing in how they continue to just deal with hurdles and come out on top."

Prosthetic insurance coverage is one of those hurdles, Nickie says. In addition to having to prove medical necessity for his prosthesis, there are limits on how often Owen can get a new one. "If he has a growth spurt after he gets this new leg [and outgrows it quickly], then we have to wait six months," she explains.

Besides the physical challenges, both Owen's family and Talen agree that the most difficult aspect of meeting Owen's medical and prosthetic needs has been communicating with Owen, who can't always adequately express all of his needs or discomfort.

"When we first started, Owen wasn't talking yet," Talen recalls. "The hardest part is that kids can't tell you what's going on. Owen could tell us when it hurt, but he couldn't tell us where or why."

His parents and healthcare providers agree that's getting a little better as he gets older and can vocalize what's going on with his leg and how he's feeling. Getting older also means that Owen can more actively participate in his physical therapy, which entails learning not to overcompensate for his leg at the expense of his back. He sees a chiropractor regularly, too.

Owen flashes his heart-warming smile.

Being a Kid

In August, Owen started kindergarten, and as he did when he attended preschool, he brought along the book he and his family made that tells his story. Nickie says the book, which is full of pictures and a kid-friendly explanation of why he has a prosthetic left leg, helps Owen avoid stares and whispers from his peers, and instead fosters conversation and acceptance.

Owen has always been open about his leg, and he doesn't mind other children and adults being curious.

"When he starts a new school year, his book tells his story, and he's very calm about all of it," Nickie says. "I hope that continues."

There are, of course, good days and bad days, and Nickie and Jason say the last surgery Owen had was particularly rough for him mentally and physically because of the amount of pain he endured. Understandably, Owen has moments when he gets frustrated.

"He wants to be a little boy, but he can't run as fast," Nickie says. "We keep telling him that eventually he'll get a running leg, and he'll be able to run faster than anyone else."

The Cole family's philosophy has always been to communicate openly and tackle one hurdle at a time. Instead of focusing on limitations, the family is always looking forward to the possibilities.

Besides swimming, Owen likes to golf and play Mario Kart. In the fall, he likes to watch football-especially the Seattle Seahawks-and this winter, he's looking forward to trying skiing through a special-needs program in Winter Park, Colorado.

"As terrible as this has been, it's also been great," Nickie says. "I was ignorant before-we led a blessed life-and this opened my eyes. You go to Children's Hospital enough and you realize that, even with something like this, you're blessed."

Tara McMeekin is a writer and editor based in Parker, Colorado.