PLASTIC SURGERY FOR DOWN SYNDROME |

Five-year-old Tim Beaumont of Memphis, Tenn., has Down syndrome.

Mildly retarded, he has an IQ in the low 50s and has the capabilities of

a normal 3-year-old. What Tim does not have -- anymore -- is a

protruding tongue, one of the condition's prominent facial

characteristics.

Two years ago, Dr. William Hickerson, assistant professor of surgery

at the University of Tennessee, performed a partial glossectomy --

tongue reduction -- on Tim. According to Tim's mother, Sally Beaumont,

his tongue had impaired his speech and caused him to keep his mouth open

most of the time. The results of surgery, said Beaumont, were dramatic.

"Before, I could hardly understand him," she said. "He spoke one or

two garbled words. But one week after surgery, he was speaking 10 to 15

words. He was saying them all along; we just couldn't understand them."

Now that Tim is able to keep his mouth closed, his mother said, "his

face just looks nicer."

Tim Beaumont is one of a small number of children in this country who

have undergone plastic surgery to alter the obvious facial traits of

Down syndrome. Although the total number of surgeries performed is not

known, it has aroused a "constant, growing interest," according to a

spokesman for the National Down Syndrome Society in New York. Calls for

information have sometimes inundated the organization's hotline, the

spokesman said.

However, as interest in the potential benefits of the surgery grows,

so does the controversy surrounding it. Proponents say that surgery

enables the children to look, feel and act more normal -- and enjoy

greater acceptance in school and in adult life. Critics question the

value of the largely cosmetic procedure. They fear that it will foster

unrealistic hopes and see the operation as a sign of rejection by the

child's parents.

Both sides agree that only a small percentage of Down syndrome

individuals are even eligible for the procedures.

Down syndrome is a genetic disorder, associated with the presence of

an extra chromosome, which affects about 250,000 Americans, according

to the National Down Syndrome Congress in Illinois. Some degree of

mental retardation, ranging from mild to severe, is usually present,

along with certain identifying physical characteristics. The facial

features include epicanthic (slanted) eyelids; small, flattened nose

bridges; receding chins, and thick, oversized tongues.

Advocates of the surgery say that it is often those physical

characteristics -- rather than the retardation itself -- that causes

Down syndrome individuals to be rejected by others, and this contributes

to the failure of some to make friends and learn job skills.

"The image that all Down children have a relatively low IQ is

inaccurate," said Dr. Garry Brody, professor of surgery at the

University of Southern California. "Some Down children have a relatively

high IQ and function relatively well in society. These children are

truly handicapped by the stigma of their appearance and do benefit from

the surgery."

About 95 percent of people with Down syndrome have IQs between 35 and

70 and are considered mildly to moderately retarded, according to the

National Down Congress. Those with IQs between 50 and 70 can learn to

read and write. The low end of the normal range of IQs is generally

considered to be 70, and 95 percent of the general population have IQs

between 70 and 130.

The surgery -- relatively straightforward and usually without scars

-- may consist of one or more procedures. Surgeons can reduce the

tongue size, which may improve speech, eating behavior, breathing and

dental health, as well as result in less drooling and better appearance.

They can also change the slant of the eyelids, reduce the distance

between the eyes and build up the small bridge of the nose, cheekbone

and chin with bone grafts or synthetic implants.

Surgery for Down syndrome was introduced in the mid-1970s in West

Germany, with other nations soon following suit. Then in 1986, the

American Journal of Plastic and Reconstructive Surgery published an

Israeli study that claimed medical and social success with 50 Down

syndrome patients, ranging from age 3 to 25.

The evaluation of the children was based primarily on the

observations of parents and teachers.

After that article appeared, American physicians began to perform the

surgery. Donna Rosenthal, executive director of the National Down

Syndrome Society, believes more doctors are getting involved. "Many of

our calls," said Rosenthal, "are from physicians."

To date, the most common and successful procedure has been the tongue

reduction, according to Hickerson, Tim Beaumont's surgeon. The operation

takes 1 1/2 to two hours and recovery usually takes about a week,

barring complications. Sally Beaumont reports that her son became more

intelligible and communicative following surgery. "All of us were much

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less frustrated," she said.

Others dispute the degree of functional benefits this surgery

affords. "Many speech pathologists don't see the improvement they

anticipated with the tongue reduction," said Diane Crutcher, a social

worker and executive director of the National Down Syndrome Congress.

But the results, said Hickerson, depend on the child's age when the

surgery is performed. "Older children can still benefit, but it's best

to do it between 3 and 5, before speech patterns are developed."

Brody, who has performed about a dozen tongue reductions, believes

the major improvement is not speech but the fact that the tongue no

longer sticks out.

The cosmetic effects of surgery also raise concern. Advocates and

critics agree that cosmetic changes and their impact on social and

psychological adjustment can only be measured subjectively.

"The bottom line," said Hickerson, "is in parental and patient

satisfaction." And many parents whose children have had the surgery --

like Beaumont -- express greater confidence in their children and

themselves. In the Israeli study, teachers reported that following

surgery the patients' classmates stared less and considered the changes

more attractive.

But others say the risks of surgery are not worth it and that the

operation may raise false hopes. "I've yet to see a child after the

operation who doesn't look like a child with Down syndrome," said

Crutcher. They still have the unsteady gait and body structure of Down

syndrome -- small stature, weak muscle tone and loose joints -- which

are not corrected through surgery, she said.

Brody agrees that parents should not delude themselves about the

results. "You can alter the appearance and decrease the stigma, but you

can't get rid of the appearance of retardation," he said. "The child's

actions and expressions will still {reveal} mental impairment."

Nonetheless, there remains for many the hope that a child who appears

more normal will face less harassment from other children. "I have seen

the ridicule these children take from normal children," said Beaumont.

"I remember when a little girl ran up to Tim and asked, 'Why does he

look like that?' Maybe they don't understand the words, but I think they

understand the feeling," she said. "That's why I had Tim go through the

surgery. I want him to have a good self-image."

Beaumont admits that the surgery does not make her son look or act

completely normal. "But what's wrong with trying to blend in with the

crowd a little more? The more normal they look, the less rejection

they're going to get," she said.

Others see the surgery itself as a rejection of the child -- a

message that even the child's parents do not accept the child as he or

she is. Said Joyce Glenner, mother of 16-year-old Sarah and president of

a Down syndrome parental support group in Rockville: "My daughter knows

her face looks different, but we reinforce that she's attractive. She

has a job after school, she has friends, she has good self-esteem.

Feeling good about yourself in achievements -- these are the important

things. The surgery will not {do} that."

Crutcher, herself the mother of a 14-year-old daughter with Down

syndrome, said, "My daughter knows about the surgery. When I asked her

if she wanted it, she said, 'I think I'm pretty the way I am.' "

Surgeon Brody believes that the tongue reduction is appropriate for

only a very few people with Down syndrome who are in the upper range of

IQ level, and he has found only three patients he thought would benefit

from additional cosmetic alteration of the eyes and nose.

"The surgery should only be performed in borderline/normal children

or self-supporting adults whose social interaction can be improved by

the procedures," he said. "For them, it is absolutely justified." Brody,

who receives about six referrals a year, fears that if done

inappropriately, the surgery could be nothing more than "an 'emperor's

new clothes' operation."

For that reason, he said, he carefully screens the family before

agreeing to do the surgery, and declines to operate if the child is

severely retarded, has life-threatening physical problems, or if the

parents have unrealistic expectations. He also questions surgery when

the primary beneficiary would be the parent.

But such strict criteria, said Hickerson, "will eliminate a lot of

children who could benefit." Hickerson said he receives about five

referrals a year and so far has accepted them all. "Is it wrong to do it

for the parents? Not necessarily. If it doesn't harm the child, if the

child also benefits, parental gratification may be a viable reason,

because the parent-child relationship is so mportant."

And so, the controversy over Down syndrome and plastic surgery rages

on. Ironically, says Sally Beaumont, most opposition has come from the

parents of other Down syndrome children.

But the opinions of their peers does not stop some families from

pursuing what they believe is a path to greater normalcy for their

children. In August, Tim will undergo plastic surgery for his eyes and

Said his mother: "If you had a normal child who had something wrong

with his face, you wouldn't think twice. You'd fix it if you could."

Ilene Springer is a free-lance writer in Merrimack, N.H.

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PLASTIC SURGERY FOR DOWN SYNDROME

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