Hearing Parental Voices:
An Opinion Survey on the Use of Plastic Surgery for Children With Down Syndrome

Thank you for your interest in our project, Hearing Parental Voices: An Opinion Survey on the Use of Plastic Surgery for Children with Down Syndrome. During the months of January, February, and March, we collected surveys from parents to assess their feelings and opinions related to plastic surgery for children with Down syndrome. It was our hope to give parents an open arena to discuss this controversial subject. We feel that the insightful comments presented by parents will be a source of education for healthcare workers, educators, and other families. As such, we have posted the results of the survey on this website for all to observe. We also plan to publish a formal write-up of these results in a professional journal. We thank those parents who took the time to fill out our survey. Your efforts are greatly appreciated!


Marcie Lewis
Graduate Student
Brandeis University

Survey Results

Total Respondents: 265

Ascertainment: How parents were recruited:

Down Syndrome News (14.3%)
NDSS website (46.8%)
Internet listservs (29.1%)
Other – friends and relatives (9.4%)


Parent: father (12.9%), mother (87.9%)

Mean birth year of parent: 1961.4 (range from 1933 – 1980, std. dev. = 8.3yrs)

Ethnic background:
White 91.7%
Hispanic 3.4%
African American 0.8%
Asian or Pacific Islander 0.8%
Other  1.9%

Education of parent:
less than 8th grade 0%
8th – 11th grade  0.4%
high school graduate 27.2%
associate degree 23.8%
bachelor’s degree 30.2%
graduate degree 18.1%

Household income:
$0-19,000 1.5%
$20,000-39,000 17.4%
$40,000-59,000 28.7%
$60,000-79,000 16.6%
$80,000+ 31.7%

Hometown description: rural (26.4%), suburban (55.8%), urban (17.0%)

Number of children with Down syndrome in family: 1 child (94.0%), 2 or more children (5.3%)

Mean number of children total in family: 2.6

Mean age of child with Down syndrome: 5.9years old

Time of diagnosis:
Before birth 12.5%
At birth 76.2%
During first year 9.4%
After first year 0.8%

Amount of inclusion in school for those children who are school aged or older:
No inclusion in school 6.4%
Partial inclusion in school 23.4%
Full inclusion in school 24.2%
Not applicable 46.0%

Number of friends of child with special needs:
All 1.9%
Most 9.4%
Some 17.4%
Few 20.8%
none 9.4%


Questions that assessed value and appropriateness of various treatments for children with Down syndrome:

Has parent pursued (or planning to pursue) the following treatments for their child?:
Type of therapy has pursued has not pursued
Early Intervention 97% 3%
Speech/Language therapy 97.4% 2.3%
Vitamin Therapy 40.0% 59.6%
Growth Hormone therapy 3.8% 94.0%

How appropriate does parent think the following goals are for surgical intervention?:
Purpose of the surgery extrem. approp. approp. inapprop. extrem. inapprop.
To alter child’s physical health 56.2% 31.3% 4.2% 7.5%
To alter child’s self-esteem 4.9% 31.7% 41.1% 22.3%
To alter social acceptance of child 3.0% 14.0% 34.3% 47.9%

In choosing interventions for their child, does parent feel their goals differ from that of the physician/healthcare system?:

goals differ 24.5%, goals do not differ 74.0%

Questions regarding how facial features of child play a role in his/her life:

At the time of diagnosis, did parent feel that the facial features of Down syndrome would affect the following aspects?
Aspect considered thought facial features would affect thought facial features would not affect
Parent/child bonding 9.4% 90.2%
Child’s self esteem 19.2% 80.4%
Social acceptance of child 70.9% 29.1%
Social development of child 30.2% 69.8%

Have parent’s responses to previous question changed at a later date:
Parent’s view at diagnosis view has changed view has not changed 
Facial features would affect one of the four aspects 29.0% 71.0%
Facial features would not affect any of the four aspects 2.9% 97.1%

Does parent feel their child’s life would be changed in the following ways if child’s disability did NOT have recognizable physical characteristics?:
Aspect Considered greatly increased increased unaffected decreased greatly decreased
Parent/child bonding .8% 1.5% 94.7% 2.3% 0%
Child’s self-esteem 1.1% 13.2% 80.0% 1.5% .4%
Social acceptance 6.8% 47.5% 35.1% 8.3% .4%

Does parent feel that their child’s facial features provide social cues for others, i.e. provide information that determines who to interact with child?:

yes (83.8%), no (15.1%)

Of 83.8% who thought facial features provide social cues, they thought providing these social cues was…:

extremely beneficial (12.4%), beneficial (69.6%), harmful (17.1%), extremely harmful (.9%)

Questions regarding feelings about plastic surgery for their child:

Which aspects of plastic surgery would the parent consider for cosmetic reasons?:
Type of procedure definit. consider prob. consider prob. not consider definit. not consider
Adjusting eyes 1.5% 4.2% 10.2% 83.4%
Inserting implants 1.5% 3.4% 8.7% 85.3%
Reducing tongue 1.9% 3.4% 12.1% 81.1%

Would parent consider reducing the tongue for the following health benefits?:
Purpose definit. consider prob. consider prob. not consider definit. not consider
Improve breathing 29.8% 49.8% 10.6% 7.9%
Alleviate difficulty eating 25.3% 49.4% 13.6% 9.1%
Decrease respir. infections 24.5% 49.1% 16.2% 9.4%
Decrease drooling 7.9% 24.2% 38.1% 28.3%
Increase articulation/speech 16.6% 37.7% 29.1% 15.8%

What are the parent’s concerns about the plastic surgery procedure?:
Aspect of concern not at all concerned mildly concerned moderately concerned extremely concerned
Physical risk 1.1% 4.5% 16.6% 76.6%
Child’s reaction to surgery 1.1% 5.3% 9.1% 82.3%
Society’s expectation of child 50.6% 9.8% 15.1% 23.0%

Overall, what value does the parent think plastic surgery has for aesthetic benefits?:

extremely beneficial 1.5%, beneficial 12.5%, detrimental 36.6%, extremely detrimental 43.4%

Would parent pursue the surgery?:

yes (8.7%), no (90.6%)


Questions regarding parent’s past experiences with this procedure:

Has physician/healthcare worker ever had discussion with parent about this procedure?

yes (10.2%), no (89.8%)

What were the parent’s feelings towards that physician/healthcare worker during this conversation (or if a conversation has not occurred, what would those feelings be)?:
Previous account with doctor extremely positive somewhat posit. somewhat neg. extremely negative
Had discussed 22.2% 25.9% 33.3% 18.5%
Had not discussed
(would feel)
5.4% 8.6% 28.5% 57.5%


Children who had cosmetic surgery in this sample:

Number of children who had undergone plastic surgery: 1.1% (3 children)

1.  removal of epicanthal folds – parent felt it was greatly beneficial
2.  tongue reduction – parent felt it was greatly beneficial
3.  tongue reduction – parent did not comment on value of surgery


Questions regarding how cosmetic surgery would affect a child with Down syndrome:

Does the parent agree or disagree that cosmetic surgery would have the following effects?:
Effect strongly agree agree neutral disagree strongly disagree
Cause an identity crisis for the child  21.9% 30.6% 26.8% 15.1% 3.0%
Create more social acceptance for the child  2.6% 18.1% 22.3% 35.8% 19.6%
Decrease child’s bond to other children with DS  3.0% 14.3% 30.6% 38.5% 12.1%
Increase the child’s self-confidence  1.1% 9.8% 28.3% 38.5% 21.1%
Create unreatlist. expecat. of the child by parents  21.9% 29.8% 22.3% 16.2% 7.9%
Allow the child to accomplish more academically  0.4% 3.8% 12.1% 34.7% 47.5%
Create unrealist. expectat. of the child by society  27.2% 37.7% 15.8% 14.3% 2.6%
Allow the child to have a better social life  1.1% 12.8% 17.0% 45.3% 22.3%


How does parent think the following would be affected if many children with Down syndrome undergo plastic surgery?:
Issue  greatly increase increase decrease greatly decrease *high # of no response
Acceptance of children with DS  0.8% 26.0% 35.5% 10.9% 26.8%
Prejudice against children with DS  9.1% 35.1% 28.3% 0.8% 26.8%

Questions regarding decisions about surgery:

Who does parent feel should be involved in the decision of whether or not to pursue the surgery?:
Person Should be involved in decision Should not be involved in decision
Parent 94.3% 4.9%
Physician 70.2% 29.1%
Child 89.8% 9.4%

Who does parent feel should make the final decision about pursing the surgery?:

parent (55.1%), physician (1.1%), child (41.5%)


Questions regarding the offering of plastic surgery for children with Down syndrome:

What kind of message does parent feel offering this surgery sends out?:

negative message (88.3%), positive message (8.3%)

Who does parent think this surgery should be offered to?:
all children with Down syndrome 25.7%
some children with Down syndrome 27.9%
no children with Down syndrome 44.2%

Due to the high volume of information in parents’ answers to the open-ended questions, those results are not posted. However, those comments are being analyzed for themes, and discussion of those themes will appear in the published version of these results.

Thank you for visiting our website. We hope this has been educational for all who have read through these results.