After some inner turmoil and much self-reflection, 15-year-old Seth Melvin says he's ready to lose his right leg.
His words make his parents cringe.
"I just want to get it chopped off," he says occasionally.
It's a decision that's been looming for much of his life.
Doctors recommended amputation in infancy, when Seth was born with a deformed leg and foot. But his father refused, in part because he felt the decision wasn't theirs to make. Because it was Seth's leg, his dad reasoned, the choice to keep or lose the limb rightfully belonged to Seth.
The condition worsened over the years until the teen had to face the dilemma anticipated since his birth. At an age when most weighty decisions involve class schedules and after-school sports, Seth had to pick between rounds of surgery to elongate his leg or having the lower portion cut off and replaced with a prosthesis.
He sought advice from other amputees and read first-person accounts to learn what to expect after a limb is gone. He touched samples of the sleek, modern prostheses that could one day serve as his new leg. And he began to emotionally detach from his own flesh.
Though more than 2 million Americans have lost a leg or arm, it's more rare for a teen to have to decide whether to keep or lose a limb, said Dr. Terrence Sheehan, medical director of the Amputee Coalition in Virginia. Often the choice is made by doctors and parents when the patient is too young to have a say, or amputation comes suddenly and without much choice through illness or trauma.
But Sheehan said the opportunity to make such an intimate and permanent decision can be empowering, even in the midst of such a great loss.
"I want it gone, honestly," Seth said matter-of-factly, anticipating his March 6 surgery in Springfield. "I get to choose. I feel bad for people who didn't want to lose their leg."
Faced with a choice
Dave Melvin joyfully wept when Seth was born on Jan. 22, 1998. He was so in awe of holding his first child he didn't initially notice two toes missing from Seth's tiny foot, the first indication that something wasn't right.
Seth — who lives in Cornell, about 90 miles southwest of Chicago — was born with fibular hemimelia, a condition where the small bone in the lower leg is either shorter or entirely missing. In Seth's case, the fibula is absent and causes instability at his ankle. The rare condition is present at birth, though no one knows exactly what causes it. Sometimes it is accompanied by other foot and leg deformities.
It's the same condition that afflicted South African runner Oscar Pistorius, who competed on two prosthetic legs in the 2012 Olympics before he made international headlines this month after being charged with his girlfriend's slaying.
Seth's right leg is about 21/2 inches shorter than his left leg. His right foot bears only three toes and is curved like a "C," similar in shape to a golf club. The shaggy-haired, introspective teen with an acute sense of humor sometimes refers to his appendage in jest as "Putter."
Doctors at Shriners Hospitals for Children in Chicago wanted to amputate when he was about 6 months old, stressing the condition would likely degenerate and cause pain. Dad said no.
"He was my first kid; I wanted to protect him," said 36-year-old Dave Melvin. "My thought was, I'm not going to take away something from him that he's never been able to use. I was worried if I had it amputated, he would resent me later in life, because I took away his leg before we knew what it could do."
But Dave began second-guessing himself as Seth approached his teens and the condition worsened, his leg growing outward and his foot slipping farther out of place.
At about 13, Seth began wearing a brace on his leg and a 1-inch lift on his shoe to even his height, but his walk remained stilted and uneven. He could run and play baseball, but the brace slowed him down and he'd feel pain after too much exertion, which was tough for a kid who loves to win. Soon his ankle was nearly touching the floor.
The leg and foot could get worse, further limiting his abilities. Choices had to be made. And they had to be made by Seth.
"It's all his decision," said 34-year-old Sarah Melvin, his stepmother. "We're just supporting him. Because he's the one who has to live with it."
Seth initially favored reconstruction, clinging to the leg that's always been a part of him.
"You want to keep it, because it's part of your body," he said. "You can't go back."
But elongating the limb would involve multiple surgeries, breaking his bone and inserting a rod. And there was no guarantee he would walk evenly or his foot wouldn't continue to slip, said his podiatrist, Dr. Brian Hamm of Bloomington.
Deciding to amputate
Seth met 64-year-old Gale "Woody" Hardester for the first time last summer at a Bloomington cafe.
The man rolled up the leg of his jeans. Seth touched the spongy material covering his prosthesis, marveling at how lifelike it appeared and how naturally the man moved.
Hardester, who was born with the same disorder as Seth, got his nickname after his leg was amputated below the knee at age 4 and replaced with a wooden one. While careful not to try to sway Seth in any direction, Hardester did rave about advancements in prostheses over the last six decades and compared the ease of wearing one to putting on a slipper or a pair of eyeglasses.
He talked about swimming varsity in high school and college, getting married and having children. He planned to walk his daughter down the aisle Saturday at her wedding in Elmhurst.
"The handicap is in other peoples' minds," Hardester said in a phone interview.
As he researched his decision, Seth began envisioning a more full life without his leg. He'll likely be able to run and play sports better with a prosthetic leg. He wouldn't have to suffer through foot pain. And there were no guarantees that his leg could be elongated. He chose amputation.
He said he was grateful the choice was his, that his dad delayed amputation when he was a baby. His father said he was a little relieved after carrying the burden for so many years.
But then Seth faced a second weighty decision. He could have opted to cut at the ankle, but learned he could actually gain mobility and prosthetic options by losing more of his own body. So he settled on a below-the-knee amputation and will part with an extra 7 inches of his leg.
Seth often talks about his leg as though it's no longer a part of him. As his sister took pictures of it for a school paper, he and his dad joked that post-amputation, they can put the photo on a milk carton under the headline "Missing."
He recently commented blithely, "I can do whatever I want with this leg. It's getting cut off. I can eat off my leg if I want to."
Then he flipped the highly flexible limb up near his shoulder and set pieces of cheese across his pale skin, as though it were a makeshift counter.
His friends want to sign his stump after the operation.
He laughs as he repeats the word "stump."
"It's just a funny word," he said, chuckling. "Stump. I'm going to have a stump."
'I was at peace'
The surgery was originally scheduled for early January. His parents were scared. Seth was not. Although he worried about phantom sensations, that his brain will be tricked into sensing a leg that's no longer there, he said he was ready.
"Honestly, I was more scared about why I wasn't freaked out," he said. "I was at peace, really."
Then he caught a cold and the operation was canceled the day before, leaving Seth angry and depressed. During announcements at school the next morning, he said he went on the intercom and declared, "Hi, this is Seth Melvin, and I still have two legs."
He awaits the rescheduled surgery next month and could be ready for a new leg made of titanium and carbon fiber around six to eight weeks later, said Robin McRae, his certified prosthetist in Bloomington.
Seth plans to walk across the stage to accept a diploma at his eighth-grade graduation in May. He wants to take drivers education this summer and run high school track next year, faster and for longer distances than he can on two legs. Hardester said he'll be cheering from the stands.
And Seth hopes to one day sit across from another prospective amputee, show off his prosthesis and share how normal life can be with just one leg.
"I'd like to help somebody make a decision like that someday," he said.Copyright © 2014, Los Angeles Times