The Care of Individuals Born with Orofacial Clefts

Cleft lip and palate are birth defects present in some children that occur when there is a lack of fusion of the lips and roof of the mouth during the embryological period. There are different variations of clefting such as the lip only, the palate only, or a combination. Incidence varies but a general estimate is 1 per 700 live births. There is no single cause of clefts, as there are a number of factors that can be responsible as nature and nurture interact during conception and embryological development. Children born with cleft lip and/or palate may present with different problems, which require assistance from various medical and allied health professionals. It is important to note that treatment services have improved dramatically over the past 20 years in all areas of patient care.     

Generally, the speech-language pathologist (SLP) will be one of the first professionals to interact with the child and their caregivers to consult and assist with oral feeding and discuss future communication development. As growth and development continues, the SLP will assess the child’s speech and language skills and provide interventions if necessary. There are also other professionals who will discuss and implement different treatment needs for the individual. Care is carried out in an interdisciplinary manner through a team-based approach. The child and caregivers generally receive services from a hospital-based cleft palate team and, when necessary, there is a transfer of some services to community-based professionals. The individual with an oral cleft will need different services starting at infancy and extending into adulthood.

The following is a listing of professionals who are part of interdisciplinary team care and their functions in the management of an individual with an orofacial cleft:

1.      Audiologist—children born with orofacial clefts are high risk for hearing problems such as middle ear infections. The audiologist assesses hearing acuity and assists in the diagnosis with an otolaryngologist.

2.      Pediatric Dentist—general care of a child’s teeth is very important, particularly children with orofacial clefts.

3.      Geneticist—the genetic history of the child and caregivers are important in understanding the problem. The geneticist helps families understand the various factors and potential problems that may be associated with different cleft types.

4.      Neurosurgeon—some children with cleft palate also present with problems of skull growth and development. They may need a neurosurgeon to carry out craniofacial surgery.

5.      Nurse—the assessment of the child’s development is very important. The nurse tracks the child’s height, weight, and head size among other important medical concerns.

6.      Ophthalmologist—some children have coexisting visual problems. The ophthalmologist treats various eye problems.

7.      Oral Surgeon—carries out corrective surgery for problems of the midface, jaws, and teeth. The oral surgeon often performs surgery such as bone grafting of the alveolus, which is the bony segment where the front teeth are located.

8.      Orthodontist—treats dental and skeletal problems of the upper and lower jaws. Many children born with cleft lip and/or palate need the services of an orthodontist.

9.      Otolaryngologist—provides medical treatment for ear problems and voice disorders and surgical services for different problems. The otolaryngologist plays an important role in the treatment of middle ear disease and other medical problems that the individual may have.

10.  Pediatrician—is responsible for the overall health-care needs of the child including periodic checkups.

11.  Plastic Surgeon—carries out surgical repairs of the lip, palate, and other facial differences that may be present. The plastic surgeon will be one of the first professionals to work with the child and caregivers.

12.  Prosthodontist—dental specialist who constructs appliances for dental restoration and improvement of velopharyngeal function for speech. Some children will need the services of a prosthodontist.

13.  Psychologist—is responsible for the child’s psychological and learning needs. The psychologist will conduct assessments, if needed.

14.  Social Worker—assists families in obtaining needed services. The social worker may assist with issues such as obtaining third-party payment or locating needed services.

15.  Speech-Language Pathologist—is responsible for the assessment and treatment of communication and feeding problems. The speech-language pathologist will monitor and treat, if necessary, any communication and/or feeding problems that arise.

Generally, if a child has successful palatal surgery between 12 to 18 months of age, speech will generally develop normally. However, if a nasal quality to the speech is identified by the SLP following initial palate surgery, they may need to undergo secondary surgical repair at a later age. Before and following surgery, speech and language treatment will vary as a function of the individual’s chronological age and level of development, but we know that speech treatment has a positive effect on an individual’s pronunciation skills. 

Children with cleft lip and palate need to be followed by a cleft palate/craniofacial team for their care. Treatment services will be recommended and many of those services such as speech will be provided in the community. Children are generally seen up to 18 years of age by a team but may need additional services through adulthood. Such services may include cosmetic procedures to improve appearance and function and speech services if the individual needs such interventions. 

In summary, some individuals born with cleft palate, embark on a journey that necessitates various treatments beginning at birth and often continuing through adulthood. Keeping in mind that children born with cleft palate constitute a low incidence area in our profession, there is a significant need for content that addresses the needs of these individuals. As previously discussed, services are furnished by both specialists in this area and generalist SLPs who typically have diverse caseloads. For some, speech, language, and hearing services are necessary, and the evidence base to support such services has rapidly expanded across the lifespan. In areas of the world where there are limited-service options, researchers and practitioners have introduced various program models to provide much needed services for communication problems. 

Cleft Palate Speech Intervention Across the Lifespan

Linda D. Vallino-Napoli, PhD, CCC-SLP/A, FASHA

Dennis M. Ruscello, PhD, CCC-SLP, FASHA