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Pretending to eat

For 5-year-old Alexis, meals are playtime - for now. Since birth, she has received her nutrition through a feeding tube into her stomach. Soon that will change.

By WAVENEY ANN MOORE
Published March 12, 2006

ST. PETERSBURG - When her family sits down to dinner, 5-year-old Alexis Banks wants a plate of her own. A stop at McDonald's elicits a request for ketchup with the hamburger that comes with her Happy Meal. On school mornings, she expects a packed lunch.

None of this should be unusual, but it is. Lexi, as her family calls her, cannot eat.

For all of her five years, she has received liquid nutrition through a gastrostomy tube inserted in her stomach. At night, six bottles of PediaSure drip into her small body. At lunchtime, the nurse at Cross Bayou Elementary School in Pinellas Park supervises her intake of two bottles of the nutritional supplement.

That could all change. Lexi soon might be able to give up the tube in her stomach that provides nutrition and the one in her throat that gives her vital breath. At long last, she might be able to swim with her brothers.

Last Monday, Lexi underwent the first of several major surgeries that could make it all possible. The kindergartener has hemifacial microsomia, a congenital birth defect that deprived her of almost half of her lower right jaw, most of her right ear and the external auditory canals in both ears. Lexi also was born with a cleft at the corner of her mouth and an undefined chin.

Last week's 8-hour reconstructive surgery at All Children's Hospital buoyed Lexi's parents. Final results won't be known for a few months, but Kim and Doug Banks are optimistic.

As Lexi watched cartoons in her hospital room, the couple took turns to talk privately about their daughter and the lessons she's taught those that know her.

"She changed our lives," Kim Banks, 39, said. Her only daughter is resilient and uncomplaining, she said. "Never once has she asked us why she doesn't have an ear," she said.

"All children are special," said Doug Banks, 40. "But she's really, really special. She's taught us about life and what's important about life. It's a blessing God's given her to us."

Kim Banks said doctors had suspected something was wrong during her pregnancy and had put her on bed rest at Bayfront Medical Center for 21/2 months before Lexi was born.

She was not breathing at birth and was rushed to All Children's for an emergency tracheostomy, during which a tube was inserted for her to breathe.

Dr. Ernesto Ruas, the plastic surgeon who performed Lexi's reconstructive surgery last week, said Lexi had been unable to breathe on her own because her jaw was so unstable that her tongue and the base of her tongue structures fell back and obstructed her airway. She remained in intensive care for close to two months. About the same time, Kim Banks received unexpected news.

"I found out I was pregnant with twins," she said.

The twins, Dustin and Riley, are now 4. Lexi's oldest brother, Cody, is 8.

"Her best friends are her brothers," Kim Banks said. "We're a very close family."

Two days after her surgery, Lexi snuggled next to a large yellow bunny, a gift from her grandparents. Nearby, a family portrait was tucked into the transparent pocket of a small, red heart-shaped pillow. Bandages covered Lexi's right jaw.

"We tried to reconstruct what's missing," Ruas said later during a telephone interview. The surgeon said he used a piece of bone from the child's hip for the procedure.

"We put it where it is supposed to be and bolted it in place by these bio-absorbable plates and screws," he said.

Ruas also reconstructed the cleft muscle at the corner of her mouth and reconstructed her tongue.

"Next is, hopefully, she will heal," he said. "If she makes it through without major complications, she will eventually need a total ear reconstruction, but that's not going to be for a while and we use rib grafts for that."

Other surgeries will be performed as the little girl grows. One of the last will be the creation of a more prominent chin, but that work will not be done until she is a teenager, Ruas said.

For now, her parents are happy that their daughter might no longer have to pretend to eat. The family has complete confidence in the work Ruas has done, Kim Banks said.

"I knew that we were in good hands," she said of the plastic surgeon, who travels to Third World nations, primarily Honduras, to perform free reconstructive surgeries.

He was featured in several St. Petersburg Times stories a few years ago when he performed life-changing surgery on a little girl from El Salvador, Maria Cortez.

She had traveled to the Tampa Bay area for the removal of a large tumor positioned where her nose and eye sockets should have been. Ruas removed the tumor and gave the child a new nose. She is doing well, he said.

As Lexi heals from this first surgery, Dr. Wade Cressman, an ear, nose and throat specialist, will decide whether her breathing tube should be removed, Ruas said.

The feeding tube will not be removed until Lexi is able to get all her nutrition by mouth, he said.

Before that happens, though, the kindergartener who likes to pretend she can have food just like her brothers, will have to get intensive therapy to do what so many people take for granted. She'll have to learn how to chew and swallow.

[Last modified March 12, 2006, 01:18:21]