I will soon begin seeing two young children with repaired complete clefts of lip and palate. These children were evaluated for the First Steps program so a therapist other than myself performed the initial evaluation and qualification for intervention. On
Let's begin with the one-year old with feeding issues. This child is atypical of children with cleft lip and palate, since he is tube-fed. Babies with clefts typically feed orally with limited modification from the first day of life, weeks and even months before the lip or palate is repaired. If the child is receiving cleft care from a cleft team that takes care of a reasonable volume of patients, it is highly unlikely that the cleft is the reason the child is tube fed. Since the clefts have been repaired, it is unlikely that they are significant complicating factors in the child's feeding development at present.
It will be important to learn the reason for the tube placement. Does the child have neurological impairment? Are there major airway or cardiac issues? Are there metabolic issues, such as uncontrolled hypoglycemia? Is there a combination of factors involved? Such factors will be the central issues to consider when treating the feeding disorder, and the treatment plan should spring from those considerations, in addition to the resulting prognosis, future medical interventions, and the family's goals for the child. You will, of course, need to carefully monitor speech and language development as well, and be ready to treat if the child shows clear pathology in either speech or language development.
It is possible, though rare, for a child to receive medical care from providers who do not work as part of a team and who do not often take care of children with clefts. We do see some unusual treatment approaches coming from inexperienced care providers on occasion. If this seems to be the case, you may wish to explore the possibility of a second opinion evaluation with the family if they express any concern or interest.
The second child, a 14 month old, is beginning to produce words, which sounds age appropriate. The first question to ask is, "On what basis did the child qualify for direct intervention?" If the answer is "cleft palate," the next question to ask is, "With what communication pathology does the child present?" If there is no communication pathology other than some excessively nasal resonance, it might be reasonable to monitor the child until other clear pathology presents itself. Resonance disorder is difficult to treat with therapy only, and articulation disorder of the type that sometimes accompanies resonance disorder usually responds best to a structured, motor learning approach which is more effectively implemented beginning around age 2. In her book, Therapy Techniques for Cleft Palate Speech and Related Disorders," Karen Golding-Kushner talks about some play activities for sound production and language stimulation. She also describes some nasal occlusion activities in play that can be used, and this book may be a good reference for you to use. But unbeknownst to many SLPs, 25%-50% (depending upon which reference you use) of children born with clefts will never need speech therapy of any kind. Since you did not do the initial evaluation, look carefully at the qualifying evaluation data. It is important to be sure you are providing therapy to treat a well-defined communication disorder, not a medical diagnosis. Unfortunately, I have seen cases in which normally-developing children with clefts have been placed in therapy simply because they have a cleft, and not on the basis of any communication pathology.
If the child seems to be developing words well, and there are no other language concerns, it may be useful to monitor language and articulation at present. Depending on the method of palate repair and how recently it occurred, some hypernasal resonance may yet resolve spontaneously. After cleft palate repair, velopharyngeal dysfunction requiring additional surgical or prosthetic management occurs in 20-25% of the population of cleft-affected children, but most centers do not proceed with imaging and management until after the third birthday and sometimes even later than that.
If you opt for continued monitoring, it will be important to remember that of the 50-75% of cleft-affected children requiring therapy, the majority have articulation disorder. For these children, a structured, motor learning approach (see the Ruscello references in the reference section in addition to the Golding-Kushner book) is usually indicated. Oral motor exercises using horns and whistles are generally not effective. If you do need to work on articulation, and the child presents with some of the unusual cleft-related "compensatory" or maladaptive articulations, originally described by Judy Trost-Cardamone, working from the front of the mouth to the back is a good way to order consonant targets. The therapy is highly structured, can be more effective closer to the age of 2, and is sometimes more effective in a center-based, rather than a home-based venue.
The most important thing that you can do right now for each child is to become a collaborative member of the child's medical care team. Ask the parents to sign a release allowing you to communicate with the cleft palate team that cares for each child, and stay in contact with the speech-language pathologist on that team. You can provide the team with up-to-date information on each child's progress, and the team SLP will be a good resource for giving direction for the child's therapy. If you can, attend a team or speech evaluation for each child, and perhaps participate in a joint therapy session with the team SLP. This allows you and the other care providers to be able to communicate effectively and provide an effective partnership for the child's habilitation.
Clark, H.M. (2003). Neuromuscular treatments for speech and swallowing: a tutorial. American Journal of Speech-Language Pathology, 12, 400-415.
Golding-Kushner, K.J. (2001) Therapy techniques for cleft palate speech and related disorders. San Diego: Singular.
Kummer, A.W. (2001) Cleft palate and craniofacial anomalies: effects on speech and resonance. San Diego; Singular.
Peterson-Falzone, S.J. (1986) Speech characteristics: updating clinical decisions. Seminars in Speech and Language, 7, 269-295.
Ruscello, D.M. (1984) Motor learning as a model for articulation instruction. In J. Costello (Ed.), Speech disorders in children. San Diego: College Hill Press.
Ruscello, D.M. (1993). A motor skill learning treatment program for sound system disorders. Seminars in Speech and Language, 14, 106-118.
Trost, J.E. (1981) Articulation additions to the classical description of the speech of persons with cleft palate. Cleft Palate Journal. 18: 193-203.
Lynn Marty Grames, M.A., CCC-SLP has been a member of the Cleft Palate and Craniofacial Deformities Institute at St. Louis Children's Hospital for 22 years. She currently serves on the Steering Committee for ASHA Special Interest Division 5, Speech Science and Orofacial Anomalies. She can be contacted by e-mail:firstname.lastname@example.org