Communication Problems Associated with Cleft Lip/Palate
Prof. Dr. Nasir Sulman
Department of Special Education
University of Karachi
Speech and language difficulties are potentially disabling on two grounds; first, the communication impairment in itself, and, secondly, because this frequently leads to and/or is concurrent with psychosocial problems which involve low self-esteem, bullying and, hence, further deterioration in communication. These problems can have long-term adverse consequences for the individual’s education, social adjustment and later employment. Attention to the wider implications of communication impairment should, therefore, feature in optimum management of speech and language difficulties. It is evident that there is a close interaction between speech and communication in general. Any intervention to improve speech and thus enhance the individual’s self-image should lead to better communication, while management to improve self-image and the development of communication skills may in fact lead to an improvement of functional speech. The interactions between these areas therefore need to be carefully evaluated, especially by the speech clinician. Team management can then be targeted on those aspects which are considered to be central in causing or maintaining the communication problems at all levels.
Cleft lip and/or palate (CL/P) is a congenital anomaly caused by abnormal facial and/or palatal fusion in the first trimester of gestation. CL/P can occur as an isolated condition, or it may be just one component of many malformations in an inherited syndrome. In fact, cleft palate is listed as a feature of over 200 recognized syndromes. Overall, it is estimated that 1 in every 700 to 750 children born each year is affected with a cleft of the lip and/or palate. In fact, clefts of the lip or palate are among the most common of all birth defects.
Cleft palate is an oral deformity affecting the hard palate (bony part of the roof of the mouth). Occasionally the soft palate, which is the soft, fleshy portion at the back of the roof of the mouth, is also affected. This deformity causes an opening from the inside of mouth into the nasal cavity. This opening might run from the front of the mouth (possibly including the lip area) to the throat and uvula (the dangling tissue that resembles a punching bag). Cleft palate occurs when the two plates of the roof of the mouth do not fuse together completely during gestation.
Cleft palate is usually not visible because it develops inside the mouth. However, cleft palate can also affect the development of the upper lip, in which case the cleft would be visible. The extent of cleft palate abnormalities can vary significantly.
Cleft lip is a visible facial/oral deformity characterized by the insufficient development of skin or lip tissue, resulting in a split or opening. Cleft lip can be mild, appearing as a simple notch or scar in the soft, pink tissue of the lip or the skin above the lip. Severe cases of cleft lip appear as a gap or opening in the lip that extends up into the nose.
Cleft lip deformities are categorized based on the location of the abnormality or defect and how much of the lip is involved.
Unilateral Incomplete: A cleft on one side of the mouth that does not extend into the nostril.
Unilateral Complete: A cleft on one side of the mouth that extends into the nostril.
Bilateral Complete: Clefts on both sides of the mouth, each of which extends into the nostril.
Microform Cleft: Considered a mild form of cleft lip, a microform cleft appears as a small, insignificant notch in the pink area of the lip, or a minor scar stretching up from the lip into the nose. Microform clefts may involve muscle tissue in the lip underneath the cleft that requires surgery, but other microform clefts may require no reconstruction.
Factors Causing Cleft Lip and Cleft Palate
The specific factors responsible for causing cleft lip and cleft palate are unknown, but are generally believed to be a combination of genetic and environmental influences. If you have a cleft, or have a family history of cleft lip or palate, your child has a greater chance of being born with the abnormality. Environmental factors that might be implicated as possible causes include exposure during pregnancy to anti-seizure medications, acne medications, alcohol and/or tobacco, illegal drugs (eg, cocaine, heroin, crack cocaine), vitamin A derivatives and other chemicals/toxins.
Diagnosis of Cleft Lip and Cleft Palate
Following birth, cleft lip and cleft palate are visible and obvious, making the conditions easy to diagnose. A thorough examination of an infant’s mouth, nose and palate confirms that cleft lip and/or cleft palate exist. To rule out the presence of other possible birth defects, additional diagnostic tests may be performed. During pregnancy, cleft lip and cleft palate can sometimes be confirmed using ultrasound.
Implications, Complications & Special Considerations
Cleft lip and cleft palate abnormalities are correctable birth defects. Most children born with these abnormalities can undergo corrective and plastic surgeries to restore proper function and appearance, making it possible for them to live healthy and productive lives.
Although the long-term prognosis for a baby with cleft lip or cleft palate who receives ongoing care, treatment and support is positive, there are physical, medical, social and developmental problems associated with cleft lip and cleft palate that parents and family members should be aware of.
Speech: Children born with cleft palate are likely to experience speech problems hindering development of their verbal ability. More than half of the children born with cleft palate will require speech therapy during childhood. Exactly how much and what type of speech therapy will vary.
Feeding: Babies with cleft palate can have a difficult time feeding because of the opening in the lip and/or palate. Food and liquids can pass through the opening from the mouth up into the nose and nasal cavity. There are certain baby bottles and nipples specially designed to help keep liquids flowing downward into the stomach. Babies with a cleft palate will likely feed better in an upright position. Infants with a cleft palate may also find that an obturator (prosthetic palate) enables them to eat properly and nutritiously until surgery can be performed.
Ear Infections/Hearing Loss: When a cleft palate is present, the Eustacian tubes (tubes that connect the ears to the throat) and external ear canals may not be positioned correctly. As a result, individuals with cleft palate are prone to middle ear infections (otitis media) caused by fluid build-up. Repeated ear infections could lead to hearing loss. For this reason, children with cleft palate usually require special tubes to be placed in their eardrums to facilitate fluid drainage. This minor surgery can be performed at the time of cleft palate repair or during a separate procedure.
Dental Problems: As a result of the abnormalities in the upper arch of the mouth, teeth may not erupt properly or may be missing completely. In such cases, artificial teeth and orthodontics (braces) are usually required. Routine oral hygiene, tooth brushing and flossing are still required to maintain healthy teeth and gums and prevent gum disease (periodontitis) and tooth decay. If the size and shape of a child’s mouth doesn’t permit the use of a regular toothbrush, a toothette (a soft sponge containing mouthwash) can be used. However, the use of mouthwash for infants or young children is not recommended.
Psychological Issues: Most children and adults with cleft lip and/or cleft palate do not experience major social or psychological problems. This is because surgeries to repair the abnormality and correct the visible defect have advanced significantly and can be performed at earlier ages. However, some people with cleft lip and/or cleft palate are dissatisfied with their facial appearance and therefore experience feelings of depression and anxiousness. Psychological support from the treatment team’s psychologist, family members, teachers and medical professionals can help with this and should be encouraged, starting at an early age.
Treatments for Cleft Lip and Cleft Palate
Children with cleft lip and/or cleft palate are treated over the course of 18 or more years. Treatment can involve a team of professionals beginning shortly after birth and continuing throughout adolescence. The treatment team includes medical, dental and other healthcare specialists who work together to address the many different and complicated needs specific to the individual. The emphasis of treatment is focused on establishing normal function, speech, appearance and improved quality of life. Members of the cleft lip and/or cleft palate repair team typically include:
Oral/maxillofacial Surgeon: Performs surgeries involving the alignment of the upper jaw to enhance function and appearance, as well as for cleft palate repair and cleft lip repair
Plastic Surgeon: Performs necessary surgeries for cleft palate repair and/or cleft lip surgery, as well as procedures to correct abnormalities related to facial structures and soft tissues
Dentist/Pedodontist/Prosthodontist: These dentists provide routine oral hygiene, preventative and restorative care, as well as restorations and dental appliances to improve function for eating and speaking, as well as to enhance appearance
Orthodontist: Orthodontists straighten and reposition the teeth
Ear, Nose and Throat Doctor (Otolaryngologist): Monitors hearing and recommends therapies should hearing problems develop
Audiologist: Evaluates hearing problems that could affect interpersonal communication
Speech Pathologist/Therapist: Works with patients to develop proper speech and phonetic abilities
Nurse/Treatment Coordinator: Supervises patients’ ongoing health
Psychologist/Social Worker: Provides counseling and support services to the child and his/her family for dealing with the abnormality
Geneticist: Explains to the parents and adult patients the likelihood of them having more children with a cleft.
Communication Problems Associated with Cleft Lip/Palate
Cleft lip and cleft palate can affect the development of communication skills in several ways. Dental and occlusal anomalies secondary to the cleft can impair articulation placement for anterior speech sounds. In addition, children with cleft palate are at risk for eustachian tube malfunction, which can result in conductive hearing loss and cause a delay in speech and language development. Most significantly, however, is the risk for velopharyngeal insufficiency (VPI) if the child was born with cleft palate (or even submucous cleft).
The potential psychological impact upon the child with a cleft lip and palate of looking and sounding different from peers cannot be underestimated. Self-consciousness surrounding facial disfigurement may cause psychosocial problems including poor interpersonal communication skills and low self-esteem. From birth, children with cleft lip and palate are, therefore, considered to be particularly ‘at risk’ regarding the development of dysfunctional communication.
Cleft-impaired children often exhibit ‘communication apprehension’, which describes a level of fear or anxiety associated with communicating with others. The adverse implications of this difficulty for schooling have been highlighted by Chesebro et al. (1992): ‘Since much of the communication between students and teachers in the classroom must be student-initiated . . . it is probable that students who feel communicatively inadequate do not engage in many of the important learning activities available in the class’. Such children can become easy targets for victimization and bullying by peers and display signs of the ‘teasing complex’, whereby those who are victimized become progressively more withdrawn and distressed. Problems are exacerbated where there is some overt disfigurement, such as cleft lip.
There is a dearth of research on the self-perceptions of children experiencing speech and language problems. These ‘children may be considered likely to have more negative self-perceptions for three reasons; firstly, the effects of failure at school and associated negative feedback; secondly the stigmatizing effects of being singled out and labeled; and thirdly, effects specific to the nature of communication difficulties’. This refers to the reciprocal relationship which exists between self-perceptions and performance, which gives rise to a self-fulfilling prophecy. That is, the ‘successful’ child, in terms of school performance and in forming personal relationships, is likely to be motivated and successful, which fuels a positive self-perception. Conversely, the child who harbors a poor self-perception of his/her own capabilities and social competence, may be less ‘successful’ in these areas, which can result in demotivation and lower levels of achievement. Adolescents with a cleft are ‘extremely reluctant to communicate in most situations’, and exhibited characteristic behaviors such as avoiding situations where they would be required to talk, avoiding eye contact by head lowering and hiding behind their hair, using low intensity and a fast pace in their speech. Contrary to their intentions, the whole demeanor and unintelligible speech of these individuals draws attention to themselves and may be worsened by features such as nasal grimace, which is distracting for the listener. Thus, anxiety about speech adversely affects their appearance, and anxieties about appearance disturb their communication skills.
How can a Speech-Language pathologist help?
A Speech/Language Pathologist provides important input and assessment for children and adults with cleft palate/craniofacial issues. The role of the speech/language pathologist is to be an advocate for speech/language development in light of physiological limitations. Speech/Language Pathologists are qualified professionals who provide assessment and treatment of speech/language/resonance related to cleft palate/craniofacial disorders. Evaluations and therapy must be initiated by a physician’s prescription. A Speech/Language Pathologist:
- Diagnose and assess individuals to determine if a communication disorder exists.
- Plan and assist implementation of therapy strategies and furnish ongoing information regarding communication programs based on assessment results.
- Workshops and programs for parents and teachers to facilitate early referral to prevent developing problems.