A new look, a new attitude
By NATALIE BAUGHMAN
© St. Petersburg Times, published November 3, 2000
ST. PETERSBURG -- The first time they met, before he performed the first of the many operations he would do, the doctor asked 9-year-old Ashley Kelleher what she wanted.
"I want you to make me a big ear," Ashley told Dr. Michael Gallant, the plastic surgeon at All Children's Hospital. "I don't want to wear my hearing aid anymore."
She had one other request: "I also want to get my ears pierced."
Ashley was born with Goldenhar's Syndrome, a disease that left her without 3 inches of her esophagus and stunted the development of the right side of her face. She had only the nub of an ear.
She has spent her whole life visiting physicians who have helped her cope with the physical and emotional stresses of the disease. For the last year, Gallant has slowly built her a right ear.
Before the surgeries, Ashley refused to leave the house with her hair in a ponytail because the children at school teased her. By the end of last school year, Ashley cried every morning. She didn't want to face her peers.
A year ago, the doctor took the first step. He wheeled Ashley into the operating room on a stretcher -- his nurses and Linda Kelleher, her 32-year-old mother, by his side.
"Ashley's a brave little girl, but she won't go into surgery without me," the mother said. "I always dress up in scrubs and stay with her until she falls asleep in my arms."
During the first surgery, Gallant removed cartilage from Ashley's ribs, built the outer formation of an ear around a silicone frame and imbedded it underneath her skull. He placed the new ear around the outside of the small ear she was born with.
On May 2, he removed Ashley's small ear and formed it into a lobe for her new ear. Two months later, Gallant cut the ear he had created away from Ashley's head, then padded it with a skin graft.
After her ear was rebuilt, she went to school with a new self-image. She understood that her ear wasn't perfect, and she knew that it was acceptable to be different. Now she wears her hair in a ponytail almost every day.
"This is me, and I'm okay," Ashley said. "I like my new ear."
Kelleher said it seems like just yesterday that she pressed her face against the glass incubator in All Children's neonatal unit, watching Ashley fight for her life. What started as a struggle at birth has since brought many years of joy to her mother.
"It's been a happy life," Kelleher said. But it hasn't been a typical childhood.
Dr. Richard Hormel repaired Ashley's esophagus in December 1991. She came out of the surgery dehydrated. She also had pneumonia.
Every couple of months after the first surgery, Dr. Hormel stretched Ashley's esophagus, making sure it didn't close. Doctors also placed a gastrointestinal tube inside her stomach to help her digest food. She couldn't eat the usual kid foods, like hot dogs and macaroni. Her nutrition came from high protein drinks that Kelleher injected into her stomach through the tube.
"It always broke my heart to see her like that, from the very first day," Kelleher said. "But her illness also made me love her 1,000 times more."
As a young child, Ashley experienced many infections in both of her ears. Doctors placed tubes in her left ear to reduce those problems. They also removed her adenoids from behind her sinuses to help her breathe.
Despite her frequent illnesses and surgeries, Ashley always has had lots of energy, Kelleher said. She takes gymnastics at a recreation center in Pinellas Park. She cheers on the T-Birds cheerleading squad. She hikes and fishes once a year at the Boggy Creek Gang Camp with other patients from All Children's Hospital. She swims, ice skates, roller skates and twirls with her Hula Hoop.
Ashley lives in Pinellas Park with Kelleher and her parents, Bob and Pam Kelleher. The Kellehers have helped Linda, a single mother, raise Ashley.
"They always joke with me and say, "You can leave, but you can't take the kid,' " Kelleher said. "They are really attached to her. They're the only babysitters we have ever had."
Living with Bob and Pam has made life a lot easier for both Linda and Ashley. Not only do they have around-the-clock child care, but they don't have to scrimp and pinch to save money. They work together as a team.
All of Ashley's surgeries and medical bills have been paid by Children's Medical Services, a Medicaid service for children with disabilities. Kelleher pays $15 a month to the Florida Kid Care Program. Medical Services takes care of the rest. "I have no idea how much the surgeries would cost," Kelleher said. "I know we wouldn't be able to afford it."
For Dr. Gallant, the surgeries are about helping needy people and gaining personal satisfaction from his work. He evaluates the cost in terms of "heart money," or how much gratification he feels in the end.
"I always reach a point in surgery when I feel that a weight has been lifted off a parent's shoulder," Dr. Gallant said. "That's when I feel like the luckiest man in the world. That's the true value of heart money."
Ashley attends Skyview Elementary in Pinellas Park. She has earned all A's and B's in Tania Westcott's third-grade class, which has placed her on the school's honor roll.
In a school science class last week, Ashley waved her hand in the air, letting Miss Westcott know that she wanted to respond to a question. Miss Westcott tossed a small blue ball to her, letting her know it was her turn to speak.
Ashley always participates in class discussions and helps other students with their homework, Miss Westcott said. She was a "passer-outer" last week, which meant she handed out worksheets and assignments to students sitting in her row.
"Ashley is a great kid," Miss Westcott said. "Her personality is awesome, she's a good student, and she has lots of friends in the classroom."
Many of Miss Westcott's lessons this year have focused on developing trust and respect in the classrooms. The lessons have helped teach Ashely and her peers to accept each other as they are.
"Nobody picks on anybody around here," Miss Westcott said. "They know I won't trust them if they do that."
Trust has been a fundamental principle in Ashley's life so far -- from counting on doctors to handle her surgeries to relying on Kelleher for care at home.
"We try to spoil her as much as we can to let her know how much we love her," she said. "In earlier days we couldn't afford to go to Toys "R' Us. Now her room looks like Toys "R' Us."
Ashley spent many days recovering from surgeries snuggling underneath her Pooh Bear comforter on her twin-size bed. She has watched almost every Disney movie on a VCR that sits on a shelf inside her closet.
The pink walls of her room are covered in posters and drawings Ashley has made. Kelleher said her favorites are the framed angel pictures that hang over Ashley's bed.
Ashley met Dr. Gallant in September 1999 through the cranial-facial team of surgeons at All Children's Hospital.
At a doctor's appointment last week, Ashley climbed onto the doctor's lap and, as always, ended the visit by kissing him on the cheek. Her mother said "thank you" as she squeezed the doctor's hand tightly.
Last month at a similar visit, the doctor had one more operation to perform.
Dr. Gallant pierced Ashley's ears with real diamond studs on small posts.
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