We consider how children experience chronic illnesses within a hospital setting. An article submitted by Vanessa Carter, ePatient advocate South Africa.
WHAT IS A CRANIOFACIAL TEAM?
Facial differences are an area of disability which have been neglected in the past. There have been many contributing factors, some which include religion, culture, lack of awareness and simple ignorance, it depends on the demographic and the country. There are common facial differences that can be corrected with surgery which most of us are aware of such as cleft lip and palate, but the majority of the severe craniofacial cases are unheard of, sometimes permanent and often life-threatening. In recent years, programs and charities have been established to focus on empowering adults and children with these visible differences as opposed to only offering surgery, this enables them to cope better in society and with any negative public reactions.
The term facial difference, whilst under review, encompasses a broad range of conditions caused by cancer, craniofacial and genetic anomalies, birth defects, burns, rare disease and trauma such as car accidents or dog bites. Facial differences have not been clearly defined as to when they are a disability and often patients are never able to claim against their rights as listed in the Disability Act which can include access to special education and tax relief.
Besides children having to deal with a life-threatening disease in some cases, they also have to deal with disfigurement and a loss of identity. The face is one of the most difficult areas of the body to perform surgery. Internationally, craniofacial teams have formed and sometimes consist of up to 30 surgeons in the most extreme cases like face transplants. It doesn’t end there, the patient undergoing the surgery has to face themselves in the mirror afterwards and be able to accept the changing reflection psychologically each time they complete another procedure.
In South Africa, we have had private doctors try to develop craniofacial teams to help these children, however, this has to be done in public hospitals because of the high cost of these complex procedures. Unfortunately, due to a lack of funding and public awareness, today one of our only craniofacial team’s (Johannesburg Craniofacial Unit) has been forced to practice in a private hospital and to raise funding for one child in these circumstances can take months, sometimes even years.
I believe that until technology improves, the way we address disfigurement should change. We should encourage acceptance through the arts, for example fashion and inclusion into various activities, like sports. In Europe, ideas such as creating play dolls with disfigurements, teaches children that it’s okay to be different. This is where education should start. Visible differences have somehow always been neglected in terms of inclusion as opposed to physical and intellectual disability.
A multi-disciplinary team for extreme facial surgery can consist of a craniofacial surgeon, micro-surgeon, neurosurgeon, psychologist, occupational therapist, speech therapist and more depending on the child’s needs. They must be able to orchestrate care as a unified team modeled around the emotional needs and well-being of the patient. Teamwork, is an art in the medical field which we need to re-evaluate if care for these conditions is truly patient-centered. At present we still work in isolation.
Has the author made relevant references to issues raised in the video lectures or articles provided in the course while also following the assignment instructions in terms of topic, task and word limit?
Yes, especially in terms of the loss of identity of the patient, especially in the long process of access to treatment. The author has offered valid suggestions for artistic intervention.
Does the author consider more than one perspective (e.g. from different disciplines, regions or points of view)?
Yes, in that she explores the perspective of the medical world and that of the patient and the patient’s very personal experience. Beyond that, is is hard to integrate religion or viewpoint into a short essay.
To what extent did the author engage you, the reader, around this topic of children’s voice?
The author highlighted a medical area I had no previous knowledge of, and made me think about the personal impact of having that kind of disease and disfigurement. Yes, I found it interesting, informative and engaging