Plastic Surgery: Is It Right For Kids With Down Syndrome?

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Beth Longware Duff, Medical Editor

Beth Longware Duff is an experienced writer and reporter whose work on a wide variety of topics has been published in numerous newspapers and magazines. Her health and medical writing credits include nationally distributed videos for the March of Dimes Birth Defects Foundation, and she is the recipient of numerous awards including an American Cancer Society Media Award and a New England Press Association Award for Health Reporting. She holds a degree in Communications from Ithaca College.


April 08 2008

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Is Plastic Surgery an Ethical Option for Children with Down Syndrome?

Parenting is challenging enough without having to deal with rejection of your child by other people based solely on his or her physical appearance; few know this better than parents who are raising a child with Down Syndrome (DS).

Among the most visible characteristics of this genetic disease are several unique facial features, including extra skin at the inner corners of the eyelids (epicanthal folds), slanting eye openings, a flattened nasal bridge, and a protruding tongue. These readily identifiable features stigmatize children with DS, their parents say, making them easy targets for playground bullies and others who treat them like subhumans. And, just like any other parent, they're ready to do whatever it takes to protect their children from social ostracism. Since the 1970s, that has sometimes meant measures as drastic as cosmetic plastic surgery.

"We live in a society that judges people by the way they look," says Kim Bussey, mother of Georgia, a young girl with Down syndrome who has undergone three surgeries to alter her tongue, eyes, and ears. "Society is not going to change overnight, so Georgia has to fit into society, rather than society fitting into the way she is."

Bussey and her husband, David, came under fire in their native England after the surgery to "normalize" their daughter's features became public. They were pilloried in the international press, accused of vanity, a lapse in ethical judgment, child abuse, and worse for putting their preschooler through what critics called "radical and painful" surgery for purely cosmetic reasons.

Writing for the American Medical Association Journal of Ethics, Michigan bioethicist Ann Suziedelis, Ph.D. says such "well-intentioned deception-by-surgery" raises practical and ethical questions. "Practically, we must ask if the surgery, which carries physical risks without medical benefits, provides the intended good effect," she noted. "Ethically, we must consider whether the benefits outweigh the burdens."

Dr. Suziedelis continues that she cannot fault parents for wanting to protect their children "from the stigma of not meeting subjective standards held by ignorant people regarding ‘acceptable' appearance." "Though we may not agree with them, it is not hard to understand why these parents seek to erase what they believe to be triggers of prejudice by ‘fixing' their children's faces as soon as possible," she wrote.

But, in a survey of 265 parents of children with Down syndrome conducted at Brandeis University, only 17% of the respondents agreed that surgical intervention to alter social acceptance of their child was appropriate. That figure rose to almost 37% when the purpose of the surgery was to alter the child's self-esteem. However, just over half of the parents felt cosmetic surgery would cause an identity crisis for the child, and 65% believed it would create unrealistic expectations of the child by society. An overwhelming majority (88%) said offering this type of cosmetic surgery sends a negative message.

The National Down Syndrome Society in the United States has taken a supportive yet neutral position on the subject, saying that cosmetic surgery should be a personal and informed decision made by the family with the help of doctors, counselors, and other interested parties.

"The goal of inclusion and acceptance is mutual respect based on who we are as individuals, not how we look. Altering a child's appearance as a means of encouraging acceptance does not change the reality of the disability," NDSS says, adding that many families believe that altering their child's facial features "would be to disrespect his or her individuality and that an important part of that individuality is the condition of Down syndrome."

H. Len Leshin, MD, of Corpus Christi, TX, approaches the dilemma as both a pediatrician and the father of 14-year-old Avi, who has DS.  He says he supports the surgery when it's done to correct a medical condition.

"If a child has sleep apnea that is due to an enlarged tongue, decreasing the tongue can help," he notes. But he adds that many advocates of people with Down Syndrome are offended by the concept of undergoing cosmetic surgery to become socially acceptable. "This is the normal appearance of a child with Down syndrome," he continues. "The key question is: Should we make these children look more like other children for better acceptance? And what is it about society that we need to take a person who's incapable of giving informed consent and changing them so they'll be better accepted?"

Dr. Leshin, who says the surgery is more popular abroad than in the U.S., says parents of children with Down syndrome should not be pressured into consenting to cosmetic surgeries, which are usually major procedures involving general anesthesia and weeks of recuperative time. And, he adds, surgery should never be considered a stand-alone therapy.

"Parents should get all information about the procedures, including risks, and talk to other parents who have had the procedures performed on their children to best make an informed decision," he advises.