Nine-year-old makes tough choice

4:37 PM, Feb 1, 2008   |    comments
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After spending one afternoon with Nicklas Nelson, there is no question he's a high-energy, critter-chasing, big-sister bothering, video game-playing, typical nine-year-old boy.

Yet, in many ways, Nick is wise beyond his years. He is a master of a thousand faces and grasped sarcasm by age three.

"He definitely sees the world not through the eyes of a nine-year-old. More like a 45-year-old," says Greta Nelson, Nick's mom.

What forced Nick to grow up so quickly is the syndrome that keeps him from walking like most other kids. It's a syndrome his family didn't know about until Nick was born.

"Once they got him into the nursery and started giving him a bath, they realized he couldn't straighten his legs," Greta says. "And when they started looking at it, they realized he was completely webbed behind the back of his legs."

It was a mystery to everyone in the room.

 
"What was really frustrating is that we knew there were some issues, there was nobody that was really able to tell us what it was," says Gary Nelson, Nick's dad.

Gary and the doctor searched through medical books for hours before finding the diagnosis: Popliteal Pterygium Syndrome.

The most common trait is a web on the back of the leg, something you can't just snip off because it's packed with nerves.

So instead, over the years, doctors performed about 15 surgeries on Nick's legs, including using external fixators to slowly stretch the knee and straighten Nick's legs.

The left is leg is doing better. But the right leg is not.

"It hurts," Nick says while stretching during his physical therapy sessions.

As a result, Nick cannot stand up straight and quickly fatigues during therapy. He finds it much easier to work out in a pool.

Outside of the water, Nick typically uses a wheelchair to get around. But kids at Rosemount Elementary School seem to notice his personality far more than his anomaly.

The difference became a bit clearer during the school's mile-long fun run in early October. While most kids use their legs, Nick powers his way around the track with an equally exhausting hand trike.

"I'm gonna smoke 'em," Nick says with a grin before the run.

For a lap, Nick made plenty of smoke -- until the chain broke. It was a tough break, but Nick would not give up.

"Want me to grab your chair so you can finish in your chair?" Nick's grandma asked.

"No," Nick replied, determined to cross the finish line despite the broken chain.

It's moments like this that make Nick wish his legs worked just like his classmates' legs.

"I would like to run like my other friends," Nick says. "I'd like to jump off the monkey bars."

Such simple desires pushed Nick to make a choice - he wants doctors to amputate his right leg.

"I just always wanted it to happen," Nick says with a smile. "My dream's gonna come true."

Most nine-year-old boys dream of going to Disney World. Nick's dream is something even adults can't imagine.

"It's really hard," Greta says, "because as a mom, I'm the one sitting there, tickling his toes that aren't going to be there anymore."

"Sometimes you have to make hard choices in your life," Nick says. "And that's one of them."

Nick's parents are confident amputation is the best option. Without the surgery, he'd remain in his wheelchair, and the pain in his legs and hips would increase. He could also develop scoliosis.

Days before the surgery, Nick seems unafraid. His physical therapy focuses on getting him ready for life without a leg and with a prosthesis.

But the night before surgery, the reality of what's about to happen sinks in. Nick begins to cry and question whether he should go through with the surgery.

"We have to do the surgery?" he asks his parents. "Is it too late? Mom, is it too late?"

Nick's parents calmly explain that putting it off won't make it go away.

"You're gonna be anxious, you're gonna be nervous, you're gonna be scared and you're gonna wonder if that's the right time, too," Greta tells Nick.

As night falls, his doubts fade away. Sunrise will bring a new beginning.

The Nelsons arrived at Gillette Children's at 6:30 a.m. on October 10.

Doctor Mark Dahl went over the procedure one last time.

"Everybody has tried as hard as we can to make this knee joint work, but the knee is too stiff and isn't working for you," Dahl explains. "So we'll get you a prosthesis, OK?"

Nick, already groggy from the anesthesia, seems fine at this point. It's his parents who are getting emotional.

"It's a hard decision but really, it's the right decision," Gary says, wiping away tears. "And I gotta keep reminding myself of that."

The family says one last goodbye as Nick is taken to the operating room.

"It's my baby and it's my baby's leg," Greta says after kissing Nick and leaving the room. "But I know this is the right thing to do, the best thing for him and this is gonna give him an absolute new lease on life."

Doctor Dahl will amputate the leg at the knee. It's a fairly standard procedure that will only take about three hours.

Friends and family gather around Nick's parents in the surgery waiting room. Nick's problems alone would be enough for any parent to handle, but seven years ago, doctors diagnosed their daughter Naomi with leukemia.

"There was a thought that we were gonna lose her," Gary recalls.

Naomi is now ten years old and living without cancer. She's anxiously waiting for her brother to get out of surgery.

When Nick finally emerges, he's still groggy but happy to see his family.

"How's it going? How do you feel right now?" Gary asks after giving Nick a big kiss on the forehead.

Nick slowly pulls the blanket off his leg to reveal the heavily bandaged stump.

"I look at him and think, 'Who are you and where did you come from with this kind-of courage and strength?'" Greta says following the surgery.

After a life filled with so many adult decisions, perhaps now Nick Nelson can just be a nine-year-old boy.

"It's time to focus on the exciting new part of his life, and moving on and letting him get on with his life," Greta says.

Nick hopes to get fit for his new leg in late November or December.

Doctor Dahl says if the prosthesis functions as expected, the left leg will probably function fairly well and won't need to be amputated.

Doctors preserved nerves in Nick's right leg, knowing that in the future, Nick could have a more advanced prosthesis, which uses those nerves and makes it easier to control the artificial limb.

By Joe Fryer, KARE 11 News

(Copyright 2007 by KARE. All Rights Reserved.)

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