Introduction
Craniofacial anomalies and reconstructive surgeries, have the ability to affect patients’ wellbeing, most fascinatingly imposing psychosocial consequences on patients, described more detrimentally than surgery itself. Alleging this topic to be a valuable and purposeful research project not only for my personal objective, career wise, I propose also to educate people upon this niche field. I decided to concentrate on the brain and the psychosocial aspects, rather than the physical effects of craniofacial conditions, a topic not quite understood, as I wished to give further insight into the harmful effects of craniofacial conditions, arising post-surgery. This report will explore the background of craniofacial conditions and how they, and reconstructive surgery which follows, can be linked to psychological and social ramifications. A variety of secondary sources were utilised including websites, medical journals, articles and my own subjective research to establish the extent of harm craniofacial conditions have on its sufferers. Despite this, I wished to utilise interviews as a resort of gathering information from primary sources such as medical professionals Dr. Walter Flapper (craniofacial surgeon), Christina Richards (speech pathologist) and Professor Rachel Roberts (psychologist), as well as patient cases, Marlon Blencowe and Jenny Bell. This outcome will hence provide conclusive evidence to substantiate my findings and proposition the strength to which the correlation exists. I believe my conclusions will bring attention to the prevalence of the psychological harm craniofacial conditions can generate post-surgery, as well as reveal how the lives of patients with acquired trauma are affected socially. I propose and advocate for change, that surgeons and medical staff may focus more on the psychological pain generated post-surgery within patients, scheduling for frequent follow-up appointments to assess the patients’ well-being.
What are craniofacial abnormalities and how are they acquired? (congenital, genetic, trauma, cancer)
Craniofacial reconstruction refers to a group of procedures used to repair or reshape the face and skull of a living person. The word ‘craniofacial’ is a combination of ‘cranium’, the medical word for the upper portion of the skull, and ‘facial’ region. More than 82,000 infants are born each year with craniofacial conditions and 400,000 people develop conditions due to cancer or injury. According to Rebecca Frey, author of Craniofacial Reconstruction, the demographics of specific birth defects affecting the head and face vary; some are considered rare disorders, which may be caused by chance mutations of a gene whilst in the womb. A Cleft Lip or Palate is the fourth most common birth defect affecting one in every 700 American new-borns, figure 1 highlighting the structure and appearance of cleft lip and palate conditions pre-surgery. Treacher Collins syndrome is a congenital disorder, caused by a mutation on human chromosome 5 which arises spontaneously or is inherited from the parents, affecting one in every 10,000 infants.
Traumatic injuries to the face and head can include blunt trauma, lacerations (tears), and burns. According to the American Burn Institute, in 2001, 16,879 adults needed plastic surgery to repair burn injuries, while 24,298 required maxillofacial surgery for injuries to the face and jaw. As of 2003, however, 70% of facial injuries treated in urban hospitals are caused by assaults; at least 10% of fractured facial bones in women are the result of domestic violence. Falls count for a significant number of facial injuries in the elderly as well as children, with another common source in children being animal bites. Cancers of the head and neck affect about 55,000 Americans each year, with these including cancers of the skin on the face, the oesophagus, the larynx (voice box), the mouth, and the nasal passages.
Before & Post-surgery treatment, including patients’ emotional responses
Diagnosis of the need for craniofacial reconstruction depends on the cause of the abnormality, injury, or disfigurement. The obstetrician or the child’s paediatrician will often make the diagnosis of craniofacial abnormalities in children at the time of delivery. Some genetic disorders that are associated with congenital facial abnormalities, including Treacher Collins syndrome, can be detected before birth by chromosomal analysis. In adults, diagnosis is usually made by trauma surgeons in the emergency room or by physicians who have treated the patient for cancer. Following diagnosis of children with congenital abnormalities, a comprehensive treatment plan is developed, including long-term psychological and surgical follow-up. Before surgery, the patient is treated and assessed by different members of the medical team (psychologists, speech pathologists, nurses, social-workers, dentists, orthodontists) to establish the patient’s initial state.
Children and adults who have had reconstructive surgery for their craniofacial conditions are usually monitored in an intensive care unit for about two days, remaining in the hospital for a total of four to five days. The recovery period is usually 10-14 days, dependant on each case, whilst the total length of hospital stay varies according to the severity of the patient’s condition; some burn victims may be hospitalised for several months. Long-term follow-up may include revision surgery six to 12 months after facial trauma. As the head and face is always growing throughout childhood, many procedures performed may become ‘undone’. In the case of children, the patient will be followed until their growth is complete. A dentist or an oral surgeon checks on patients who have had craniofacial surgery following trauma to ensure that their teeth and jawbones are in proper alignment. Many congenital conditions require long-term management from birth to adulthood, sometimes beyond.
The psychological aftereffects of a disfiguring congenital abnormality or post-traumatic injury are often problematic. Craniofacial reconstruction in children with congenital syndromes typically includes ongoing psychological assessment and counselling to help the parents and the child cope with feelings of guilt, as well as deal with teasing or ridicule from others. Many parents blame themselves for their child’s condition if associated with a genetic disorder. Psychiatric symptoms in children are often intensified as they reach adolescence and become even more preoccupied with their appearance. Emotional responses to surgery varies, with the expectations often being incredibly high. Many with the most severe craniofacial deformities won’t ever be reconstructed to the point of a ‘normal’ face. Facing us back to reality, we are reminded that the surgical intervention of a patient doesn’t guarantee a ‘new’ or ‘perfect’ face, but rather a transformation from less presentable to more presentable.
Mental Health disorders (PTSD, Depression, Anxiety)
“Knowing I was ugly was harder to endure than my 22 surgeries…no one else could possibly understand what it was like to feel so ugly and so alone.”, quoted a Crouzon Syndrome patient about her appearance. Mental health takes a major toll on craniofacial patients’ well-being post reconstructive surgery. Various studies have reported that 10-70% of patients may experience symptoms of depression and anxiety after a facial trauma. Many patients may feel inferior to others in social presentation which could lead to social withdrawal, anxiety and isolation. An interview with assault victim, Marlon Blencowe, determined that for most, the “psychological damage has been worse in many ways than the physical damage.” Jenny Bell, Cleft Lip and Palate patient stated that “my self-esteem took a big hit in my teen years especially when I realised I would never look like the beautiful girls at school. I was angry in a lot of ways wondering why I couldn’t just look perfect.”
Children who have had a disfiguring injury often develop post-traumatic stress disorder (PTSD), depression, or anxiety. One study found that 98% of children between the ages of three and twelve who had been disfigured by accidents or dog bites had symptoms of PTSD within five days of the traumatic event. A year later, 44% of the children still had symptoms, and 21% met the full diagnostic criteria for PTSD. According to psychologist Professor Rachel Roberts, people often have signs of trauma. Some situations which meant the patient’s disfigurement, resulting in the need to consult a craniofacial surgeon, has been a traumatic experience such as a terrible burn or a car accident that’s related to the trauma. Sometimes trauma is connected to the medical treatment itself. Often the treatment is very painful and difficult, so patients may find trauma within the dreadful feelings of pain or uncanny experiences with anaesthetic. Sometimes with patients, seeing their reflection post-surgery causes traumatism through undelivered expectations. Especially after craniofacial surgery patients’ faces are presented swollen, bloody and scarred; most don’t understand that initially the result post-surgery is a shock, but after the recovery period the swelling reduces. In addition to this, Professor Roberts stated that “working with traumatised children can in some way be more difficult, as trying to address the issue through revisiting the trauma can trigger more distress.” Aside children, adult patients also have high rates of depression, PTSD, or anxiety disorders following craniofacial reconstruction. Support groups as well as individual psychotherapy appear to be effective in helping people learn to live with disfiguring injuries or the aftermath of surgery. Specific concerns include coping with awkward social situations as well as internal feelings of guilt or anger. Some researchers have reported that men find it harder to adjust to facial disfigurement than women, possibly because males in Western societies are not encouraged to discuss concerns about their appearance.
Childhood development (speech therapy, behavioural issues, learning disabilities)
Interviewee Christina Richards, speech pathologist of the Australian Craniofacial Unit, cited that craniofacial conditions amongst children means statistically they have almost twice the chance of developing a learning disability or difficulty in some way.
The rate of childhood development with children amongst this unit is higher than the population of children exclusive of craniofacial conditions. Christina Richards works with congenital patients and their families for almost two decades until the child has reached dento-facial/skeletal maturity at around 17-18years. It is often that speech pathologists focus on infant feeding management, parent education (ways to facilitate early speech and language development), and preoperative/postoperative speech reviews in association with palatal and orthognathic (jaw) surgery. Sometimes congenital facial disfigurements, as well as acquired trauma, impacts hearing which may lead to receptive and expressive language difficulties, as well as articulation attention and learning delays. As a specialised speech pathologist, Richards recounted that it is necessary to complete a thorough initial examination/speech assessment (speech recording), so that baseline is established as an important preoperative measure, used to assess surgery. Medical journal… congenital craniofacial conditions can potentially effect the child’s cognitive development as well as peer and family relationships.
Childhood development (bullying, society’s responses)
Facial abnormally leads to disfigurement, also affecting the social image of a patient. Due to their surgeries not always restoring their appearances to ‘normal’, patients with severe deformities are therefore subject to more intense psychological and social burdens of stigmatisation. Clinical psychologist, Professor Rachel Roberts, works closely with children to ensure they’re receiving the correct support at school and in their environment. Often treated as outcasts and “displayed as circus freaks”, results in the hardest psychosocial challenge for most craniofacial patients of learning to cope with the social response to their appearance, which often leads to social withdrawal. A patient case study recounted her childhood and teenage years living with her operated cleft palate, that her disfigurement, although repaired, took a toll on her self-esteem and confidence especially in school due to bullying, and missing out on social opportunities. Alike many patient studies, children or adults, encountered ignorant individuals who were nasty and derided them. The face being the first aspect people look at, means that many question craniofacial patients as to “what’s wrong with your face?” Derogatory names such as deformed and ugly, as well as stares and comments from the public affect the self-esteem and confidence of craniofacial patients. Craniofacial patient of a Children’s Hospital of Richmond at VCU Centre, explored many teenager’s feelings regarding their own craniofacial diagnoses, with many teenagers expressing they learnt to ignore those who bullied them, whilst also educating them on their condition, resulted in their bullying concluding.
Family relationships/dynamics
Relative to congenital craniofacial disorders, medical staff are required to advise families that their child will most likely never have a ‘normal’ appearance. Common reactions are parents turning to denial of reality, emotionally straining themselves and their familial dynamic. Parents pay the emotional cost of managing negative reactions of strangers towards their child’s appearance. Parents’ marital relationship, whilst possibly strengthened in the face of adversity, may be negatively affected. With lack of social support, resulting in social isolation, it is little wonder why parents may experience overwhelming symptoms of guilt and naïveté regarding their child’s condition. Thomas Pruzinsky, author of the Social and Psychological Effects of Major Craniofacial Deformity journal, stated that many parents experience emotional impacts of grief, anxiety, guilt or anger as the birth of their child with a craniofacial deformity is profound. He quoted that “they [patients] are subject to visual and verbal assaults, naked stares, startled reactions, ‘double takes,’ whispering, remarks, furtive looks, curiosity, personal questions, pity, laughter, ridicule or avoidance.” It is often that parents blame themselves if their child’s condition if associated with a genetic disorder. Professor Rachel Roberts claims that parents often question whether they’ve contributed in causing congenital conditions through dormant genetics in their body which have been passed onto their children. Psychological concerns regarding families are ensuring parents are balanced in protecting their children from ridicule whilst avoiding overprotectiveness. A challenge many parents of craniofacial children face, is that they’re aware to avoid mollycoddling their children. Professor Roberts recounted an occasion where a child, born here in Adelaide with a cleft lip and palate, caused overwhelming emotional strain that the parents decided to put their child up for adoption post-surgery. Sometimes parents’ own marriage is effected since each parent has their own ideas or views about their child’s condition, which often clash, so on average these parents often divorce.
One survey, conducted in Boston, Massachusetts between 1992 and 1997 determined the rates of divorce amongst parents of children with various types of craniofacial anomalies, analysing possible confounding factors. Parents were questioned regarding pre-and postnatal marital stability, whether the child’s facial anomaly contributed to divorce, and involvement in the child’s welfare. Rates of divorce versus non-divorce were compared for craniofacial anomalies. Surveys were sent to both parents in 412 families; 403 surveys were returned. Frequency analysis demonstrated an overall divorce rate of 6.8% and 4.9% separation. 79% of non-divorced couples reported a strong prenatal relationship, whereas 59% of divorced couples reported a problematic relationship. Following birth of the affected child, 47% of non-divorced couples responded that their bond became stronger and 41% of divorced couples alleged their relationship worsened.
Conclusion
The emotional and social effects post-surgery amongst craniofacial patients’ well-being, both congenitally and traumatically acquired, are too clear to disregard. There is significant evidence from multiple credible sources, including medical journals, medical professionals and patient expression, indicating that many psychosocial ramifications arise post-surgery amid craniofacial patients. Whilst conducting my research, I discovered that acquired trauma and congenital conditions have the potential to provoke mental-health disorders within patients, specifically ascending post-surgery. With the physical and medical component of reconstructive surgery being readily followed up, the psychological aspect, often more detrimental than any physical concern is frequently overlooked. With many supported reports of psychological distress amongst craniofacial patients, there is great wonder, regarding the current medical system, as to why frequent follow-up appointments merely entail physical examination, yet lack inclusive psychological treatment. With significant and alarming psychosocial ramifications being determined post reconstructive surgery for patients with craniofacial conditions, I advocate that medical staff may concentrate their attention towards the psychological pain generated post-surgery within patients, with psychological treatment being as readily available as medical follow-up treatment, to ensure patients’ well-being is preserved as opposed to deteriorating.