cleft palate

SUMMER 200630 UF TODAY 31 UF TODAY 31

Making Life Palatable

hristopher Tebo-Hardin’s parents wanted to place an advertisement in his eighth-grade yearbook as the school year drew to a close. It’s a ritual hundreds of families

go through each year. Dig up a baby picture or find a recent photo and pen a few words: “We’re so proud of you,” or “Good luck in high school.”

But when David Tebo and Tina Marie Hardin went through this exercise, they saw a lot more than the passage of 13 years. They saw the miracle of modern medicine.

Christopher was born with both cleft lip and cleft palate, birth defects with stunning facial deformities. Tebo said he was unprepared for the twisted little face looking up at him.

“Christopher was missing half his nose,” Tebo says. “There is no history of birth defects in our family, so the facial deformity was quite a shock. We knew right away we were in for a long haul.”

They decided to take that journey with UF’s Cranio-facial Center.

“They told us this defect is 99 percent correctable,” Tebo said. “That’s a powerful thing to tell a family.”

From their home in Lakeland, Christopher could have been treated at many hospitals in Florida. The fam-ily chose the UF Craniofacial Center because it stressed frequent interaction with the family. Christopher became a patient at 10 days old. He’s now 14, and the same plastic surgeon who operated on him as a baby is set to perform his final surgeries before he turns 18.

By Cindy Spence (BSJ ’82)

UF’s Craniofacial Center brings dozens of specialists together to

focus on one of the most common birth defects.

C

Christopher Tebo-HardinPhotography by KOR Photography

FEAT

UR

E

SUMMER 200632 UF TODAY 33

His UF family includes Virginia Dixon-Wood (MA ’78), a specialist on craniofacial speech disorders who has watched Christopher grow up.

“It’s a warm feeling to be able to follow these patients,” says Wood, who was recently invited to the college graduation of a 23-year-old patient. “They

just do so, so well. They are talented, com-passionate and empathetic.”

About one in 750 babies is born with cleft lip or cleft pal-ate each year, making it one

of the most common birth defects. Although it is also one of the most correctable birth defects, its deformi-ties cause anxiety for the parents, says Center Medical Director John Nackashi (MD ’79).

“Their emotions about their child’s facial disfigure-ment are right at the surface,” says Nackashi, who has met with families each Thursday for 18 years. “It takes nothing for those emotions to come out.”

Cleft lip and cleft palate can affect the ability of a baby to feed, and a cleft palate that is not repaired can lead to unintelligible speech later in life along with dental disease and deformities, Nackashi says.

The reassurance Nackashi and his colleagues offer comes in the form of a team of pediatricians, speech pa-thologists, orthodontists, pediatric dentists, maxillofacial surgeons, plastic surgeons, psychologists, social workers, geneticists, audiologists, nurses and ear, nose and throat specialists. The goal of treatment is normal speech, physi-cal appearance and overall development for the children. The center even sponsors a summer camp so children won’t worry about being teased.

The team also is breaking new ground in craniofacial research.

Center Director Bill Williams (PhD ’69) and his colleagues are excited about the results of a recently completed 10-year study that is expected to create a new standard for the surgical treatment of children born with cleft abnormalities worldwide.

The center collaborated with a hospital in Brazil to conduct the study, which was funded by the National Institutes of Health. The partnership provided the vast patient population needed to compare surgical tech-niques — the Brazilian hospital sees 20 times as many patients in a year as the UF team.

The study evaluated surgical techniques to determine which resulted in the best speech outcome. At a recent conference held by the World Health Organization, the study was recognized as one of the most significant stud-ies in the history of cleft care.

“Now we can definitively say we know the best surgi-cal technique,” Williams says.

The center is following up with a study to evaluate which surgical techniques result in the least disturbance to the growth of the face and dental arch.

The center staff ’s knowledge and experience reassured him, Tebo says.

“When it comes to medical and psychological things, the better professionals are the ones with years of experi-ence. You feel awfully comfortable when it’s the same crew every visit,” Tebo says. “I told [my son’s] plastic surgeon, ‘Please, don’t retire on me.’”

Emily Silcox, an 18-year-old senior at Columbia High School in Lake City, says she, too, became attached to the UF craniofacial team.

Born with a cleft lip and cleft palate, her life has been punctuated with surgery: lip repair, nasal reconstructions, nerve grafts and grafts to take bone from her hip to repair her palate.

Emily says she hasn’t been teased in “a long, long time,” one sign of her surgical success. Still, she says she came to embrace her differences with the help of the UF counselors.

“My differences help me reach out to others who are different,” says Emily, who wants to study speech pathol-ogy in college. “They helped me look at my birth defect as a good thing. I don’t know how I would feel about it without that group of people.”

Nackashi says Emily is an example of a success story that can be generalized across many children, although her family support was crucial, too.

“We’ve learned over the years how to do surgery cor-rectly and at the right time,” Nackashi says. “But what’s neat about Emily is the family made every effort to have a normal environment for her.”

Dixon-Wood found the same commitment in the Tebo-Hardin family. A couple of years ago, she noticed Christopher was not reading at grade level and knew a UF program could help him. Getting him to Gainesville once a week was a problem, though. Then Christopher’s grandfather stepped in, ferrying him to UF once a week to work on reading skills. The result: Christopher made Junior National Honor Society.

“Speech, reading and phonics go hand in hand,” says Dixon-Wood. “We can’t treat this unless we look at the whole child, and that’s why the team is so important. And

Chris’ family made the decision that he was go-ing to be Chris, and not a cleft kid.”

Rachel Owen Dyson, a former patient who worked at the center while pursuing studies in speech pathology, says families found it reassuring to talk with her because she was proof that “this won’t destroy their child’s life; their child won’t be a monster.”

Tebo says Christopher never asked “why me” and never retreated from the world. He plays soccer, sings and dances, and when he meets other youngsters like him, “he wants to give them a hug.”

“There is a light at the end of this tunnel; you see this being fixed,” Tebo says. “He goes into surgery one day and it’s, ‘Oh my gosh, he’s got a nose.’”

Sifting through photos for the yearbook, the changes in his son are clear. Clearest of all, Tebo says, “you can see it in every picture. There’s a lot of love there.”

Christopher is looking forward to turning 18 and get-ting his final surgeries behind him. Says Tebo, “We’re sort of at the point that this is the end of the Picasso.” u

Web sites: www.cleftspeech.com, www.cleft.ufl.edu

About one in 750

babies is born with

cleft lip or cleft

palate each year,

making it one of

the most common

birth defects.

SUMMER 200632

Christopher Tebo-Hardin

Emily Silcox

Rachel Owen Dyson

“My differences help me reach out to others who are different.”

— Emily Silcox