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DSSA’s viewpoint on facial plastic surgery
Changing the looks of a person with Down syndrome is such a small part of the syndrome and altering the appearance will not change the behavior and intellectual ability of such a person. Judging from all international journals and magazines we came to the conclusion that only a small portion/coverage, if any, is given to facial plastic surgery. Researchers in the field of Down syndrome do not spend a lot of time on this topic and regard it not as important as general early intervention and inclusion in the mainstream of life. In the whole it does not seem to be a popular choice for families. On the list of important issues regarding Down syndrome facial plastic surgery seems to be one of the least important.
Secondly one can not be too sure that changing or altering physical appearance will definitely remove prejudice regarding Down syndrome from the community. Prejudice is strongly rooted in culture and result mainly from a lack of information.
We strongly object against surgery being done on young children with Down syndrome purely for cosmetic reasons. Some of us even thought that it borders to child abuse in a certain way. When children are older they will understand the procedure better, be a deciding partner and will be able to give better verbal feedback regarding their pain, feelings, etc. once the operation is done. Such feedback from a four year old is not always reliable and consistent and often misleading. Parents should also realise that follow up operations might be necessary later in the child’s life, the earlier some of the surgical procedures are done.
We agree that in some instances facial plastic surgery for medical reasons could alter the quality of life of individuals with Down syndrome. These medical reasons happen to be to decrease infection, and to improve breathing, swallowing and drinking amongst others.
DSSA chooses to be non-directive regarding any treatment if we can be sure that there is no or little risk for the person with Down syndrome. Therefore we oppose the giving of one sided subjective information and we endorse the research outcomes of well designed and well controlled studies. It is vital that the family needs to know and consider the dangers of each operation. Above all however, having facial plastic surgery stays a personal choice.
Altering the appearance of our children and young adults do however oppose the official trend and slogan of Down Syndrome South Africa namely to include and accept our children and to ‘Count us in’. People with Down syndrome need to be accepted for who they are and for the value they can bring to society. It would be a sad day if personal appearance or the ability to blend in physically, would indicate in any way the quality of life of an individual or whether or not he should be accepted.
Magda Lourens 26th April 2000
Herewith an overview of Plastic surgery as given in two books from our library. I would like to hear from you if you can add anything from books in your libraries stating the outcome of research.
DOWN SYNDROME - THE FACTS
Mark Selikowitz – Consultant Developmental Paediatrician, Sydney, Australia
An OXFORD medical publication published in the US in 1997
Some controversial treatment programmes
Plastic surgery can be performed to change the appearance of children with DS. These operations have been carried out since the mid 1960’s. Whether a changed appearance is advantageous is something that each child and his parents need to decide for themselves. Surgery causes pain and distress, and is not without risk.
Silicon implants can be inserted under the skin to build up the bridge of the nose, the cheeks and the chin. These are usually relatively minor procedures, requiring a general anaesthetic and a couple of days in hospital. Parents have generally been pleased with the results. It is important to realize that the bridge of the nose, cheeks and chin all grow with the child, and such operations should be deferred until after puberty, when the child will be better able to understand the implications of the operation.
Epicanthic folds usually get taken up as the nasal bridge grows or, in the case of the surgery described above, when a silicone implant is inserted. Epicanthic folds can be surgically removed if they persist after puberty. Protruding ears can also be operated on. This is a relatively common operation, which has a high success rate.
An operation to remove part of the tongue became very popular in the early 1980’s. As mentioned earlier, some children with DS have a habit of protruding their tongue. They can often be taught to keep their tongue in their mouth, using a gentle discouraging method either by way of verbal cues , such as ‘tongue in’ or ‘in’ or physically touching his chin or lower lip, gently brushing it upwards. There is a proportion of children, however, in whom the habit persists. If the large tongue is unsightly, a tongue-reduction operation may be considered. The operation is probably best left until it is clear that the tongue is a problem, which is usually after 4 years of age. Unlike the silicone implants and removal of epicanthic folds discussed above, this is a major surgical procedure. The tongue is a vascular mobile organ, and complications, such as infection, wound opening and obstruction to breathing may occur during the first 4 to 6 weeks after the operation, when the tongue is very swollen. Some of the taste organs on the tongue are removed during the operation, and so a decrease in taste sensation occurs. As many as one-third of parents have reported reservations about the results of the operation. Improvement in speech clarity rarely occurs, and speech may be worse in as many as 1 in 10 children after the operation. This means that, if the operation is performed, it should be for cosmetic reasons only. Speech difficulties in DS are usually due to faulty messages from the brain and cannot be improved by an operation on the tongue.
Plastic surgery certainly has a place in the treatment of some children and adults with DS. The dangers of each operation must be known and considered. Plastic surgery should be done to improve an individuals appearance, rather than his behaviour or intellectual development. (Magda Lourens Past Chairperson DSSA - 2000)