Commentary

Column: A brave girl with a rare disorder getting long-awaited ear

snagem@newsobserver.comFebruary 28, 2013 

Kennedy Goodwin, who has Goldenhar syndrome, a craniofacial disorder, poses for a photo with Carolina Hurricanes captain Eric Staal.

AMY HENDERSHOTT

Kennedy Goodwin loves to ride her bike, swim in her family’s backyard pool, go to Carolina Hurricanes games with her dad and feed her pet hamster.

What the 10-year-old doesn’t do is spend much time talking about the 17 surgeries and countless doctors’ visits she has endured.

Kennedy, a fifth-grader at Leesville Road Elementary School in Raleigh, was born with Goldenhar syndrome, a craniofacial disease in which facial features and the spine don’t form properly.

The disorder has caused numerous medical issues for Kennedy – chronic sinus infections, scoliosis, lower-than-normal lung capacity. She has only one kidney.

And then there are the more-obvious effects: She was born without a right ear, and facial paralysis on the right side makes for a crooked smile.

Throughout Kennedy’s struggles, she and her family have hoped to spread a message of acceptance.

“Everybody looks different, some in more pronounced ways than others,” said her mother, Amy Hendershott. “But it’s OK.”

Many surgeries

Over the years, Kennedy has undergone dental surgeries. Doctors removed her tonsils to ease sleep apnea. They gave her a titanium rib so that her heart and lungs could have more room to develop. They put a hearing aid behind her left ear.

And soon, Kennedy will have more surgery. After years of tough decisions, she’s getting a prosthetic ear – just in time for middle school.

Kennedy is good at ignoring strangers’ stares, Hendershott said. Her friends like her just the way she is.

But Kennedy decided she wanted to have the procedure.

“Middle school (years) are not the easiest years – for any kid,” Hendershott said.

Doctors have tried before to build an ear for Kennedy. Twice, they used cartilage from her ribs to form an ear. Twice, infections set in and destroyed their efforts.

This time, specialists at Duke will pin back her misshapen left ear and create a mold for the right side.

Team Kennedy

I know Kennedy because her parents and I attended West Virginia University and are active in the local alumni group. I met her last fall at a high school football game and was struck by her courage and easy-going spirit.

The family has formed Team Kennedy, a network of friends and relatives who rally support. The group raised more than $10,700 for the Duke Children’s Hospital in a radio telethon last year.

Goldenhar occurs in 1 in every 3,000 to 5,000 live births, according to the International Craniofacial Institute. While the cause is unknown, medical experts think it may occur when an embryonic blood vessel bursts in a fetus’ face.

The prosthetic ear is exciting for Kennedy, but it won’t mean the end of the road. Doctors will likely implant a nerve from her leg into her cheek to reverse some of the effects of facial paralysis. They might fuse her spine to ease the scoliosis.

When she was 5, Kennedy nearly died – twice – after surgeries. The operating room is never an easy place to be.

But ask Kennedy about everything she’s been through, and she probably won’t have much to say about it all. She tends to bottle it up inside, Hendershott said.

“I don’t understand why people think I am a hero – I am just Kennedy,” her mother told me she said recently. “I want people to look at me and see just Kennedy, not a stupid syndrome.”

She’s Kennedy, a die-hard Hurricanes fan who has met her favorite player, Eric Staal, and even named her hamster after him.

A girl who recently got her first cell phone so she can text her older sister, who’s away at college.

A dreamer who wants to turn her love of sharks into a career as a marine biologist.

A fighter who’s finally getting an ear.

snagem@newsobserver.com or 919-460-2605

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