Seth Melvin, 15, arranges a drum kit in his room Thursday afternoon. The teen is scheduled to get part of his right leg amputated in March.

Seth Melvin, 15, arranges a drum kit in his room Thursday afternoon. The teen is scheduled to get part of his right leg amputated in March. (Anthony Souffle, Chicago Tribune)

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.