It's been said, "You can't judge a book by its cover." Yet because of their facial features, Down's syndrome children have been neatly classified as being "dumb" and thus unable to function in society.
Cranial facial surgeon Louis Morales Jr. is working to change that perception.Through aesthetic surgical procedures, the local medical specialist is modifying the appearance of some Down's children. His goal: To improve the way they are viewed by society - and by themselves.
"If other people think they are abnormal, they (the Down's children) grow up thinking they are abnormal," said Morales, medical director of the Cranial Facial Panel at Primary Children's Medical Center. "It has an effect on the way they perceive themselves and function. Whatever we can do to improve their appearance is helpful."
Down's syndrome is a disorder present at birth. It appears in an average of one of every 800 births, among people of all nationalities, social and economic backgrounds. It was once called Mongolism because the facial features of young victims were thought to resemble those of Orientals.
The disorder is characterized by such physical features as upward-slanting eyes, a flatness of the face and nose, a
mall head, open-mouth posture, protruding tongue, short, stubby hands and mental retardation.
Down's may also be accompanied by other congenital abnormalities, including heart disorders, and gastrointestinal and respiratory problems.
"Despite the fact that these are more life-threatening, the face is the body part not hidden from society, and is more the evidence of the disorder," Morales said.
"We know that the spectrum of mental retardation in Down's is quite variable, from severe to moderately retarded," Morales said. "Obviously when they are young, their parents are going to take care of these children. But what happens when the parents die? What are we going to do as a society to help them out?"
Feeling that many Down's individuals would be employable if the stigma of their disorder was reduced, a team of medical experts from Primary Children's five years ago initiated a thorough study of the disorder, and surgical ways to diminish the disparity it creates.
Their interest was ignited by the success of a group of West German physicians, the first to operate on Down's syndrome patients. A review of their 300-400 patients following surgery showed an 85-90 percent "good or excellent" rating in the correction of the open-mouth posture.
The local team, eager to assist U.S. children with the debilitating disorder, applied for a grant from the National Institutes of Health.
News of their proposal spread throughout the community, and Morales was inundated with requests to operate on dozens of children with Down's. A postponement of the team's comprehensive study didn't dampen Morales' dedication.
He began accepting patients and during the past five years has done several surgeries.
Three were done to change the patients' facial features. At least a dozen more have been performed to reduce patients' large, protruding tongues.
"The open-mouth posture appears to be the most obvious Down's characteristic because when you see a child who walks around with his mouth wide open, and his face sagging, you obviously think he is mentally retarded," Morales said.
Thirty to 45 percent of children with Down's have large tongues. Children with Down's usually also have smaller-than-normal oral cavities, so they often open their mouths, allowing the large tongue to protrude. Children with Down's typically also have poor muscle tone around the mouth, so their jaws sag.
Parents deal with the problem by tapping the chin - a gentle reminder to close their mouths.
People with Down's typically also have speech problems. It has not been determined if tongue reductions improve their speech.
The procedures are much simpler than the extensive cranial facial surgery for which Morales has received world recognition. But parents and patients have been pleased by the results.
Among the procedures done is augmenting deformed noses; detaching a small ligament to correct up-slanted eyes, and using a technique similar to suction lipectomies to give the face a better contour.
Morales has operated on Down's children as young as a year old. No Down's child, regardless of the severity of his mental retardation, is denied surgery.
But the surgeon has a major stipulation. Like all individuals undergoing cosmetic surgery, Down's patients and their parents must not have unrealistic expectations about the surgery.
"They must understand it is not a cure for Down's. It is just an attempt to make their child look better so he is better accepted in society," Morales said.
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