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Columbia Daily Tribune | Original Link

by Paula Goldenberg

Columbia, MO ?Imagine a young girl, about 10 years old, hobbling around on a pair of wooden crutches, her left foot bandaged from yet another surgery.

To many people, crutches are symbols of injury and limitation. To Columbia native Judy Johnson Berna, crutches were a symbol of freedom because she could crutch twice as fast as she could walk. Those crutches were a way for her to keep up with siblings and peers after realizing her left foot was growing crooked, a result of a spinal surgery she underwent as a newborn.

Now fast-forward a few decades. On Jan. 12, 2004, Berna, then 38, became an elective amputee.

Her prosthetic leg offers her to live a more active lifestyle. The crutches, once her key to freedom, are retired.

GROWING UP

Berna was born to an Air Force computer maintenance officer and homemaker at Westover Air Force Base in 1967 in Massachusetts. Six-month-old Berna and her family moved to Columbia, where she would attend Parkade Elementary School, Jefferson Junior High School and Hickman High School, when her father retired from the Air Force and took a job at the University of Missouri.

When Berna was born, “the doctors noticed that I had something wrong with the bottom of my spine. I was sent to Boston’s Children Hospital, where a tumor was removed, as a newborn. My parents were told at that time that I had spina bifida and that I would be in a wheelchair and not have any control from the waist down,” Berna said.

But that’s not what happened.

“When I was 6 months old, I started developing on time, and I took my first steps on time.” My parents “thought the doctors had fixed it enough that I was going to be OK,” Berna said.

But by fourth grade, it became evident to Berna that her foot wasn’t working right.

“I was that quiet middle child that didn’t want to cause any trouble, so I didn’t say anything to anybody. I just dealt with it, and I first noticed” the deformity “when I couldn’t get to the bus stop as quick, I couldn’t run anymore,” Berna said.

Berna couldn’t do most things on the playground because they involved running or jumping. At sleepovers, Berna stayed in socks and, when she could, left her shoes on, too. The already shy Berna found herself becoming more self-conscious.

“I think when you’re a kid with something to hide, no matter what it is, you get good at acting. I tried my best to play the part of socially well-adjusted teen, but inside I felt alone because I knew no one knew my secret, and I didn’t trust anyone enough to tell them,” Berna said.

Fashion was another hurdle for Berna. Her left foot prohibited any sort of dress shoe or heel, so dresses were a rare wardrobe choice.

Berna was constantly on guard, thinking ahead when it came to social situations. “Pool parties were out because I couldn’t walk barefoot, and swimming in shoes would surely draw attention. Any sports-related things were usually out. I wanted so badly to play on the Hickman Powder Puff football team when we were seniors and the girls played football while the boys were cheerleaders. But there was no way I could even consider it,” Berna said.

Berna’s father, Leon Johnson, remembers his daughter keeping the issue of her foot under wraps.

“She was very discreet about hiding her foot,” he said.

FAILED SURGERIES

Berna’s deformity “definitely slowed her down but never stopped her. It actually made her work harder,” said Dale Johnson, Berna’s younger brother, who remembers Berna struggling to keep up during family trips to Six Flags and family games of volleyball and basketball.

Still, such a full household meant Berna’s parents’ attention was split. It was not until an elementary teacher’s phone call that Berna’s limping was brought to their attention.

“My mother took me to some specialists, and they saw that my foot was growing crooked, and they didn’t know why. At this point, they didn’t tie it to the spina bifida. They said, ‘Let’s see if we can fix it.’ For most of my childhood years, they did a surgery to correct whatever structural problem was going on, and that would mess up something else. Then they would do another surgery to fix that,” Berna said.

Berna spent most of her years growing up on crutches, the wooden pair becoming a normal part of who she was, Berna said.

Berna, who could not grip with the toes on her left foot, never wore flip-flops and “had to literally tie my left shoe as tight as possible so the shoe wouldn’t fall off,” she said.

With every surgery, Berna was forever the optimist. She went in believing that each one would be the one to give her a “normal” foot.

“I’d ride that optimism until the day they took the smelly cast off, and once again, I’d see that withered foot but with another new set of scars and stitches. The doctor would then start the speech about how it would look better after a little bit of physical therapy, but I knew that physical therapy never changed anything. Half of the exercises they gave me I couldn’t do because I lacked the range of motion, and the other half didn’t really make a difference because they couldn’t change the shape of my foot,” Berna said.

The deformed foot would go through at least four new sets of stitches and scars before amputation.

A NEW FAMILY, A NEW OPTION

Berna met her husband, Jeff Berna, while they both were students at Missouri State University in Springfield. They started a family not long after marrying in 1989.

By the time she was in her 30s, her leg had deteriorated to the extent of needing support in the form of a leg brace.

“My spinal cord was connected to the scar tissue from the spinal surgery I underwent as an infant, so as I grew, it stretched and stretched, and the signals were not getting through to my left foot, ultimately causing the deformity,” Berna said.

Berna credits her midwife for pushing her to get her left foot looked at after the birth of her third child at the university hospital. Berna had an MRI soon after, during which her tethered cord was discovered. She underwent a spinal surgery to untether the stretched cord from the scar tissue.

“It was not going to make everything better, but it would hopefully keep things from getting worse,” Berna said.

The Bernas welcomed their fourth child in 2000.

As her children grew up and became more active, there were many times Berna had to stay behind. Her family enjoys the outdoors, going on hikes and bike rides. A majority of the time, Berna had to stay behind.

“I was constantly left at home or left to sit in the car while Jeff took the kids on fun hikes and adventures. I kept telling myself I liked the peaceful alone time, but in reality, I was missing out on adventures with my kids,” Berna said.

Doctors told the mother of four that as she got older, circulation to her foot would continue to slow that and she would be spending more time on crutches. But Berna didn’t want to live the rest of her life without being an active member of her family.

Then one day she was surfing the Internet and stumbled upon the journal of an elective amputee from England. After reading his story, she started taking the elective amputation option for her own foot very seriously.

Berna began actively searching for a doctor to perform the elective amputation in 2002 after her family relocated to Washington, D.C.

“No doctor would even talk to me about taking it off because to them it was healthy even though it didn’t work right. I started visiting prosthetics offices to see what the hardware would look like if I had this done, what would my leg look like and about patients ? what their common complaints were. I was also able to visit different people who made legs and worked with amputees. The more I researched, the more it just made sense,” Berna said.

A NEW STEP FORWARD

After years of searching for a willing doctor and even scheduling the surgery in D.C., Berna had to postpone. Her husband took a job transfer to Utah, and Berna had to leave her doctor behind. Fortunately, the Amputee Coalition of America put Berna in contact with an amputee in Utah who referred her to surgeon Michael Hess.

Berna met with Hess, who agreed to perform the surgery; her left leg was amputated below the knee.

“She explained to me how it’s been a problem her whole life. She was right, she is better off without it,” Hess, of Utah-based Mountain Orthopaedics, said.

Although many in the medical community did not initially support this decision, Berna’s family was behind her.

“She had shared with us her research and that she was confident enough to do this, and I felt like she was making the right decision for her,” said Berna’s stepmother, Eileen Johnson, a retired nurse.

Part of that confidence stemmed from the promise of new activities.

“One huge event that solidified my decision was the chance to ski. I had always watched Jeff and the children ski and yearned to be out there myself. It was boring to sit in the lodge with the lunch cooler. On the first anniversary of my surgery, I took my first ski lesson and loved it from Day One,” Berna said.

Prosthetist Joe Mahon of Utah-based Peak Prosthetic designed Berna’s first prosthetic leg with those sorts of activities in mind.

“We encourage patients to do what they want to with their lives. In Judy’s case, she wanted to ski and hike and be active with her family,” Mahon said.

And Berna is anticipating more adventures.

Recently, Mahon sent another prosthetic foot to Berna, this one designed especially for steep mountain trails.

The Bernas moved from Utah to New York in 2006 and lived there until 2011 before locating to their current place of residence in Colorado.