Abstract

Facial plastic surgery is an intervention that some have proposed to improve the physical functioning, appearance, and social acceptance of individuals with Down syndrome. Our purpose in this study was to examine the opinions of parents of children with Down syndrome about this practice. Two hundred and fifty parents responded with usable surveys and were generally familiar with the practice, yet the majority of respondents did not support the surgery. The literature on this topic is reviewed, and related issues are discussed.

Down syndrome is a chromosomal disorder that can result from three separate genetic errors: trisomy, translocation, and mosaicism. It has been estimated that individuals with Down syndrome represent 5% to 6% of all persons identified with mental retardation (Beirne-Smith, Patton, & Ichenbach, 1994). The disorder is characterized by as many as 50 different physical signs (Cleland, 1978). Although the number of actual physical signs varies from individual to individual, as does the range of abilities, the general physical appearance of persons with Down syndrome is remarkably similar (Drew, Logan, & Hardman, 1992).

Educational and medical advances, such as early intervention and cardiac surgery, have allowed individuals with Down syndrome to function at much higher levels and live longer lives than in the past. Increasing numbers of individuals with Down syndrome are able to read, write, and function at near normal levels (Pines, 1982). However, a persistent obstacle to their full acceptance in both school and society may be their characteristic appearance.

The characteristic features of Down syndrome are easily recognized by the general public (Gath, 1985), although the disability itself may not be completely understood. Modern society places tremendous emphasis on the attractiveness of the face and body, and those who deviate from the socially accepted appearance may experience rejection (Gath, 1985; Kravetz, Weller, Tennenbaum, Tzuriel, & Mintzker, 1992; Pueschel, Monteiro, & Erickson, 1986). In a recent Internet survey of parents of children with Down syndrome, 70.9% of respondents believed that the facial features of Down syndrome would affect the social acceptance of their child (Lewis, 2000).

When a child with a disability is born, some parents may experience feelings of loss, anger, and disappointment. Foster and Berger (1985) reported that the news often upsets the entire family's equilibrium, causing the family to freeze in its developmental cycle. The loss experienced by the family is not necessarily for the child with the disability but, rather, for the idealized “original” child, the one without the disability (Powers, 1992). The hopes that parents have invested over the course of the pregnancy suddenly seem unattainable as they try to grasp the depth and permanence of their child's disability. These parents are faced with having to deal not only with their own emotions, but also with the reactions of others to their child's physical appearance.

Since the 1970s, facial plastic surgeries have been performed on children with Down syndrome in an effort to reduce the social stigma and negative expectations associated with the disability (Lemperle & Radu, 1980). However, Katz, Kravetz, and Marks (1997) questioned whether parents select surgery in an effort to satisfy their own needs or the needs of their child; it is not clear that parental interests can be separated in this decision-making process (May & Turnbull, 1992).

In reviewing the literature on this topic, we found few recent publications on facial plastic surgery for individuals with Down syndrome, and no specific data indicating how often these surgeries are done. Our purpose here was to investigate the current information and opinions that parents and guardians have about facial plastic surgery for their child with Down syndrome.

Facial reconstructive surgery for children with Down syndrome most often involves multiple procedures. Tongue reduction is the most commonly performed procedure, along with implants in the bridge of the nose, chin, cheeks, and jawbone. Other interventions may include Z-plasty on the eyelids to erase the characteristic epicanthal fold, removal of fatty tissue from the chin and neck, and ear repositioning (Lemperle & Radu, 1980; May, 1988; Olbrisch, 1982; Ross, 1980; Shapiro, 1982; Wexler, Peled, Rand, Mintzker,. & Feuerstein, 1986).

Proponents of facial surgery for individuals with Down syndrome claim the surgical procedures will reduce the physical characteristics thought to accentuate mental retardation, thus improving physical functioning and appearance. In addition to the presumed reduction of the stigma associated with mental retardation, surgery has been proposed to improve speech, eating, breathing, and general health as well as facilitating social acceptance, increasing parental happiness, and decreasing parental anxiety (Lemperle, 1986; Olbrisch, 1982; Shapiro, 1982; Wexler et al., 1986). Three broad goals, therefore, have been used to justify the surgery: improved physical functioning, appearance, and social acceptance (Katz & Kravetz, 1989).

Although it is beyond our scope in this paper to review the literature on whether or not the surgery accomplishes these three goals, we can state, in general, that investigators who use impressionistic data, based on the responses of parents and doctors who were directly involved, have found overwhelming evidence for the surgery's positive outcomes (Kravetz et al., 1992; Lemperle, 1986; Lemperle & Radu, 1980; Olbrisch, 1982, Olbrisch, 1985; Rozner, 1983; Wexler et al., 1986). However, researchers who utilize more critical and controlled research designs (e.g., using indirect questions, control groups, and less involved participants) show less positive results (Alkawitz, 1987; Arndt, Lefebvre, Travis, & Munro, 1986; Katz et al., 1997; Kravetz et al., 1992; Novoselsky, Katz, & Kravetz, 1988; Parsons, Iacono, & Rozner, 1987). In some cases, these results even suggest that the operation failed to produce the desired effects.

Proponents of facial plastic surgery have claimed that it does not produce harmful psychological side effects (Olbrisch, 1985), even though no critical research has been conducted regarding the stresses experienced by the parents and children before and after the surgery. Lewis (2000) noted that one of the major concerns of parents regarding plastic surgery procedures is the child's reaction to the surgery; in fact, 52.5% of the respondents felt that cosmetic surgery would cause an identity crisis for their child. Other side effects include surgical complications, pain and discomfort (May & Turnbull, 1992), displacement of implants, and the possible need for additional surgeries as the child grows (Dismore, 1998). In addition, concerns have been expressed that there could be a decrease in the acceptance of children with Down syndrome and an increase in prejudice against them if many children with Down syndrome have the plastic surgery (Lewis, 2000).

This radical form of intervention has aroused controversy between those who claim that the three broad goals set for the surgery are met (Olbrisch, 1982; Wexler et al., 1986) and those who doubt its effectiveness (Dodd & Leahy, 1984) and even oppose its use due to the possibly damaging psychological effects (Belfer, 1980). Pueschel et al. (1986) found that parental opposition to facial plastic surgery was consistent across all ages and genders of children, although the parents reported that their child's facial characteristics impaired their mental and social development.

Our purpose in this study was to investigate parents' and guardians' opinions about facial plastic surgery for children with Down syndrome. Although Lewis (2000) investigated similar opinions, her study was restricted to a sample of parents who were accessed through an Internet survey. Our sample also included parents who may not have had Internet access. In addition, relationships between the age of the child with Down syndrome, parental demographic variables (e.g., age, ethnicity, level of education, and opinions about facial plastic surgery) were tested.

Method

Participants

Participants were 466 parents or guardians of individuals with Down syndrome. They were all members of an advocacy group in the northeast United States for parents or guardians of children with Down syndrome.

Instruments

We developed a survey to allow us to collect demographic information, such as marital status, age of parents, age of child with Down syndrome, number of children, level of education, and ethnicity. Multiple questions were asked about the parents' familiarity with, and opinions about, facial plastic surgery for children with Down syndrome. In addition, they were asked whether their child with Down syndrome had experienced facial plastic surgery and, if so, to describe the outcomes. Space was provided for parents to write comments regarding facial plastic surgery for children with Down syndrome.

The survey was printed in a 4-page booklet and was piloted-tested on executive board members of a parent advocacy group for children with Down syndrome. They were requested to respond to the content of the questions, the ease of understanding the questions and survey format, to include any additional suggested questions, and to provide any suggestions that would improve the survey. Responses from the pilot were reviewed, and changes were made in the survey to reflect parental concerns. These changes included revising the wording of some items, adding items, and deleting items some parents felt were offensive.

Procedure

Surveys were mailed to the 466 members of the Down syndrome advocacy group. In an accompanying cover letter, we explained the purpose of the study and indicated that the survey envelopes were coded for follow-up purposes only. Respondents were assured that their responses would remain confidential. Those who wanted a copy of the survey results were told to fill out an enclosed postcard with their name and address; these postcards were immediately separated from the survey when the envelopes were opened. A self-addressed stamped envelope was enclosed to facilitate the survey return.

As the surveys were returned, the code on each of them was recorded from the envelope. Based on a review of these recorded codes, approximately 8 weeks after the first mailing, we sent a second mailing, encouraging responses from those who had not yet returned their survey.

Results

After the first mailing, 242 surveys were returned; an additional 57 surveys were returned after the second mailing. These 299 returned surveys represented a 61% return rate. Of those returned, 49 surveys were not useable because they were from individuals who were not parents or guardians, so the analyses reported were based on 250 cases. Some individuals omitted responses to some of the survey items, so the number of respondents varied on some questions.

The mean age of the respondents was 46.88 years (standard deviation [SD] = 11.73, range = 23 to 82); the mean age of the respondents' spouse was 45.96 years (SD = 9.81, range = 25 to 90). The mean age of their child, or in some cases children, with Down syndrome was 14.37 years (SD = 10.35, range = 1 to 46). The mean number of all children was 2.89 per family (SD = 1.55, range = 1 to 12). Three respondents (1.2%) were single, 207 were married (83.13%), 15 were divorced (6.02%), 6 were separated (2.41%), and 18 were widows or widowers (7.23%). With regard to educational level, 65 respondents and 53 spouses had completed graduate school, 72 respondents and 70 spouses had completed a 4-year college, and 63 of the respondents and 63 spouses had less than a 4-year college education. The preponderance of the respondents were Caucasian (226, 93%), with 2 (.08%) African Americans, 3 (1.2%) Hispanic/Latinos, 4 (1.6%) Native Americans, and 10 (4%) from other ethnic backgrounds.

In response to the survey items that determined the respondents' familiarity with facial plastic surgery as an intervention for children with Down syndrome before receiving the survey, 217 parents (87%) said that they were familiar with the surgery and 32 (13%) stated that they were not. Table 1 presents information on how the respondents who were familiar with the surgery learned about it. Because respondents could give more than one response to this question, the totals are greater than 100%.

Only 3 respondents (1%) indicated that their child had undergone facial plastic surgery, and the exact procedures that were performed were not specified. When asked whether they intended to pursue facial plastic surgery for their child, 3 additional respondents (1%) said yes, 220 (88%) said no, and 18 (7%) said maybe. Six parents (2%) did not answer these questions. Table 2 presents reasons given by 24 parents who indicated a willingness to have or to consider having surgery for their child. Table 3 provides the reasons given by the 220 parents who would not support the surgery. In Tables 2 and 3, the percentages total more than 100% because the respondents could indicate more than one response.

Chi-square analyses were conducted to determine whether there were any significant relationships between the demographic variables of parent or child age, number of children, or parental education levels and their familiarity with or opinions about the surgery. None of these relationships were significant.

Discussion

Although the literature from the 1970s and 1980s indicate that facial plastic surgery for individuals with Down syndrome was a relatively widespread practice (Lemperle & Radu, 1980), the results of the current survey indicate that few parents actually had these procedures performed on their child. The vast majority of parents and guardians who responded to this study (88%) reported that they did not intend to pursue facial plastic surgery for their child. Only 3 parents (1%) reported that their child had the surgery; this is similar to the number of parents who reported that their child had the surgery in the Lewis (2000) study. Whether this represents a decline in the use of the surgery or whether the surgeries are occurring more frequently in other areas of the world is unknown at present. In addition to the 3 parents who reported that their child had had the surgery, another 21 parents were either planning to pursue the surgery or were considering it. Most of them reported considering the surgery to alleviate a physical problem, although many also were concerned about how it could reduce social stigma and help their child lead a better life. These reasons paralleled those mentioned in other studies on this topic.

The parents who responded to this survey were familiar with the use of facial plastic surgery as an intervention and had strong opinions about it. Only 13% were not familiar with the surgery. Television shows and magazine articles were the ways that most of the respondents learned about these procedures. The parents in the current study had negative opinions about the surgery; in fact, many respondents sent pictures of their children and wrote long notes expressing their feelings about the surgery. Of the parents who reported that they did not intend to pursue surgery for their child, 95% reported acceptance of their child as he or she is. Whether the manner in which the surgery was portrayed in the media was a central factor in shaping parental opinions is unclear. For example, in a television program on the Discovery Channel (Dismore, 1998), Dr. Kenneth Salyer, a craniofacial surgeon, stated that the surgery could take away the “mask of deformity.” It was evident that this topic spawned strong emotional responses from many of the respondents.

Research is inconclusive as to whether facial plastic surgery has some medical benefits for individuals with Down syndrome. Although surgery is a medical intervention, it is evident from their responses that some parents also view it as a way to help prevent some negative attitudes and reactions that their child had received from others. Although these findings are similar to Lewis's (2000) results, Alkawitz (1987) and Novoselsky et al. (1988) found no evidence of greater social acceptance after surgery.

As mentioned by some of the survey respondents and by others in previous research (May, 1988; Novoselsky et al., 1988), much of the social rejection of people with disabilities is because of their behaviors, not just their appearance. Some of our respondents expressed concern that removing the characteristic facial features of individuals with Down syndrome may have the negative effect of eliminating cues that may help people understand and recognize their behavior. In addition, they expressed concern that surgical changes in physical characteristics would subject their child to unrealistic expectations. These findings are similar to concerns that other parents have raised about widespread use of the surgery increasing prejudice towards those with Down syndrome (Lewis, 2000). In their qualitative feedback, many parents indicated that the focus should be on changing attitudes towards individuals with disabilities, not appearance. Parents pointed to the need to educate the larger population about people with Down syndrome, in the belief that knowledge of the disability could help to reduce the social stigma often associated with it.

The respondents in our study were relatively homogeneous, which may have influenced the lack of significant relationships between parental opinions and demographic variables. They were predominantly white, married, and well-educated. Whether this reflects the membership of advocacy groups in general or is idiosyncratic to the part of the United States where the respondents lived is uncertain. In addition, parents of children with Down syndrome who do not belong to advocacy groups may have different information about the facial surgery as well as different opinions. However, because they do not belong to any easily accessible group, they would be difficult to survey. As a result, the homogeneity of the sample of parents in this study makes it difficult to generalize these findings to all parents of children with Down syndrome and is a limitation of this study.

Although the majority of our respondents did not support the surgery and indicated that they accepted their child as he or she is, many questions remain unanswered. We still do not know how widespread this surgery really is, nor do we know whether the parents who did not respond had different views and experiences. If these surgical procedures continue to be utilized, further research needs to be conducted on its prevalence, its effectiveness, and its impact on people's attitudes and acceptance of people with disabilities.

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Author notes

Authors:Jennifer Goeke, PhD, Assistant Professor, Graduate School of Education, 10 Seminary Place, Rutgers University, New Brunswick, NJ 08901. Danielle Kassow, PhD, Adjunct Instructor, Department of Educational and Counseling Psychology; Deborah May, EdD, Professor and Director (maysped@csc.albany.edu), Division of Special Education, and Chair, Department of Educational and Counseling Psychology; Deborah Kundert, PhD, Associate Professor, Division of School Psychology, Department of Educational and Counseling Psychology, State University of New York at Albany, Albany, NY 12222