You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: A Brave Face
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A Brave Face -- Article by Jim Ritter, published in the USA Weekend on January 25, 1998
Subheading: Deformed at birth, Joe Catrambone has not merely coped -- he's triumphed. Now, at 26, he wants to help others like himself.
By Jim Ritter
(Large Photo: Of Jim Catrambone as an adult, with PS standing behind him...in a dr's office. Caption: Joe Catrambone endured a painful operation every year or two while growing up. Behind him is one of his Chicago doctors, John Polley.)
(2 Smaller photos, one at age 5 and one at age 16)
To look at his baby pictures, you'd never have guessed Joe Catrambone would grow up to be such a handsome young man. The pictures how his mouth and nose horribly deformed by a double cleft lip and palate. Doctors wouldn't let his mother, Terri, see him for two days after he was born. "It was heart wrenching," she says.
But Catrambone had beautiful eyes, a loving family and skilled plastic surgeons at the University of Illinois' Center for Craniofacial Anomalies. After 14 operations, about the only remnant of Catrambone's birth defect is a tendency to snore through his surgically rebuilt nose.
Oddly enough, "it was a positive experience," Catrambone says. "When you're born with adversity, you're able to adapt to more difficult situations."
The craniofacial center, founded in 1949, is the oldest program in the Chicago area that treats facial deformities. The center recently celebrated the opening of a $2.5 million office complex where a child can see a pediatrician, plastic surgeon, speech pathologist, orthodontist, psychologist, neurosurgeon and other specialists under one roof.
The center's motto: "Working to put happy faces on over 1,000 kids every year."
Philanthropist Renee Crown, whose daughter was treated at the center for a cleft palate, spear-headed fund-raising for the new building.
About one in 600 children is born with facial deformity, the most common being cleft lips and palates. A cleft lip is a vertical split in the upper lip. A cleft palate is a gap in the roof in the mouth. Catrambone had two clefts in his lip and two in his palate.
Center doctors transform faces like sculptors. If a child has a deformed ear, a surgeon rebuilds it with cartilage from the ribs. If the eyes are too far apart, the surgeon cuts bone around the eye sockets to bring them together.
With some children, doctors are unable to rebuild facial features with natural tissue. So the center creates artificial ears, eyes and noses that look normal and, sometimes, restore function.
About 40 percent of children with facial deformities also have significant social problems, says center psychologist Kathy Kapp-Simon. These children have few friends, are reluctant to join organized activities and are teased almost daily. "They don't establish normal relationships with classmates," Kapp-Simon says. "Going to school is very difficult. They don't want to go out at recess." Counseling -- teaching children how to handle teasing and advising them against using their deformities as an excuse to withdraw -- has been shown to be a big help for about 60 percent of children who have social problems.
Catrambone, 26, recalls having few such problems, thanks to his outgoing personality and strong family ties. His three older brothers made sure no one in the neighborhood made fun of him. And his parents treated him no differently from his six siblings.
His closest friends looked past his disfigurement. His father recalls that when Catrambone was hospitalized for one of his operations, one friend didn't realize he even had a deformity.
Catrambone did get teased, but it didn't bother him much. "I thought that people who made fun of me were among the most insecure people out there," he says. "It was more a reflection on them than on me."
At birth, Catrambone's mouth was so misshapen he could not breast-feed or use a regular baby bottle. He drank milk from a type of nipple that zookeepers use to feed baby lambs.
In separate operations, surgeons closed his cleft lip and palate. But much work remained. Four upper teeth hung down like fangs. It took six years in braces to fix them. His nose looked as if it had been flattened by a football. It took two operations to rebuild it. There was a throat operation to repair a speech problem, a bone graft from his hip to his gum and a skin graft on the inner lining of his lip.
Catrambone had an operation every year or two, usually when school was out during the Christmas holidays.
(Insert Bold Caption: "I thought that people who made fun of me were among the most insecure people out there.")
The surgeries were painful. "But you forget about it," he says. "From the results I got, it was worth it."
His appearance had greatly improved by the time he entered first grade, but "you could tell there was something different about me," he says. The deformity was less noticeable in high school, and almost imperceptible by the time he entered college.
Still, doctors would do things differently today. Instead of hiding a baby from his mother, they now try to reassure parents immediately by showing before-and-after pictures of children such as Catrambone.
Doctors have learned to combine several procedures in a single operation. A child born today with a condition similar to Catrambone's would need only five or six operations. And instead of being hospitalized three to five days each, they'd go home the same day or the next day.
Catrambone is applying to the University of Illinois medical school in Chicago. He plans to become a plastic surgeon and train under Mimis Cohen, who performed Catrambone's 14th and last surgery in 1994. His goal: to become one of those skilled surgeons who put happy faces on children.
#End of Article#
Byline: Jim Ritter is a health reporter for the Chicago Sun-Times, from which this article is reprinted.
Subject: Joanne's Letter in the Sun Times
This letter ran in the Monday 2/2/98 edition of the Chicago Sun-Times. There was a sidebar entitled "Readers have their say on cleft palate article". Here's the article:
"Editor's note: On Nov 23, the Chicago Sun-Times described how doctors at the University of Illinois' Center for Craniofacial Anomalies repaired a boy's double cleft lip and palate in a series of 14 operations. The article was reprinted in the January 23-25 USA Weekend. It prompted several email letters from parents who consider the article insensitive. The following letter, by Joanne Green of Stockton, Calif., is representative.
"I must write to you to register my protest of the article "A Brave New Face" by Jim Ritter, published on the weekend of Jan. 24 -- a reprint from the Chicago Sun-Times. I am the editor of Wide Smiles Magazine (distributed in all 50 states and in 31 countries) and I am the director of Wide Smiles Inc., an international support and information network for families of children born with cleft lip and palate. See our Web site at www.widesmiles.org. The uproar about this article from the people I serve (both parents of cleft-affected persons or persons who are cleft-affected themselves) is, understandably, defeafening! In this article, Mr. Ritter discusses the life of a young man born with bilateral cleft lip and palate. His depiction of that young man -- and by extension, all persons born with cleft -- was demeaning and insensitive and demonstrated a level of sensationalistic journalism that I would have thought below the standards of USA Weekend and the Chicago Sun-Times. I am the mother of three cleft-affected children. Two of those children were born with bilateral clefts, just the same as Mr. Catrambone. My children were beautiful from the first time I saw them. In fact, they are my children by adoption. I looked at their beautiful (albeit cleft-affected) faces in a photograph, and I said, "YES! I want to be his mommy!" I had no problem realizing from that baby picture that my child would grow up to be an attractive individual. They were each adorable babies. To state that a person with a cleft "(is fed) from a nipple that zookeepers use to feed baby lambs" is sensationalizing the truth. In the past, a lamb's nipple was used to feed babies with cleft--but to state it the way it was stated is to suggest that our babies are little more than wild animals (though lambs are domesticated. Why did he throw in zookeeper, if not for sensationalism?) By the way, there are now some very effective bottles used specifically to feed human children born with cleft. My children are midway through their repairs. They do NOT look like their noses were "pushed in by a football" and their teeth do not hang down like fangs." That is just totally irresponsible journalism. My children have no problem at school. In fact, they are quite popular with their friends and very outgoing. It is journalism such as this that will be used to continue a stigma that cleft-affected persons have long sought to rise above."
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