In the light of the documentary Skin Deep on plastic facial surgery done on a
4 year old child with Down Syndrome, shown on Sunday 23 April on SABC 3, I
thought of sending information and an official point of view from Down Syndrome
South Africa on the topic.
PLASTIC SURGERY
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.
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 realize 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.
Prepared by:
Magda Lourens 26th April 2000