Managing an Unrepaired Cleft Palate

Question

I am seeing a new 10 year old student who was previously identified as speech impaired, mentally retarded, hyperactive, impulsive and with acting out behaviors. This child has had 3 unsuccessful surgeries to repair a cleft palate. An obturator was previou

Answer

The following are comments based on the questions:

1. When you say that 3 attempts at palate repair didn't work, I presume that he has a large fistula due to breakdown of the repair and there have been two attempts to repair the fistula. I wonder if they have tried a tongue flap or buccal flap for repair, which is usually more successful than using local tissue for large openings.
   
   
2. If the fistula (palate opening) is larger than a dime, it needs to be either surgically repaired or obturated for any progress to be made with speech. Speech therapy corrects function*. It does not correct structure. If the abnormal structure causes nasal emission, loss of oral air pressure, or hypernasality, that cannot be corrected with speech therapy. In fact, therapy for speech may be a waste of time and money in this case.
   
   
3. According to the accepted parameters of care by the American Cleft Palate-Craniofacial Association, children with a history of cleft palate should be followed by a craniofacial team and have regular visits. If he has not seen the team for a while, and especially if he has a large fistula or open palate and is not wearing an obturator, he needs to be re-evaluated by a craniofacial team as soon as possible. I would insist upon this before even starting therapy.
   
   
4. If food was getting lodged in the fistula with the obturator, it probably didn't fit well. Also, if the child can eat without it, then he could take it out during eating. Regular cleaning and normal hygiene would help the odor. Therefore, this should not be a reason not to wear it.
   
   
5. Speech therapy is like piano lessons. Daily piano lessons will not help a child to learn the piano faster. Instead, the piano lesson, or therapy session, is to teach the child new skills. Then, there must be daily PRACTICE at home, preferably several times a day, for the skill to become easy to do and habituated. This is the responsibility of the family. The family needs to work very closely with the speech pathologist and serve as part of the treatment team.
   
   
6. Parents don't tell the doctor what pills they will take and how often. In the same way, they should never dictate what the speech pathologist should or should not do. It needs to be a joint decision based on the parents' goals and the speech pathologist's expertise. It would be unethical to deliver a service that is inconsistent with sound professional judgment.
   
   
7. The oral aversion is probably unrelated to the cleft, but is definitely aggravated by the palatal opening. Potato chips and more textured food can lodge into the fistula or opening and be particularly uncomfortable for a child with oral aversion.

In summary, the palatal opening needs to be repaired or obturated as soon as possible. Speech therapy twice a week would be appropriate after that happens. The parents should practice with the child daily. Even with this, the prognosis is guarded given the age of the child, and the cognitive level. If progress is not being made, then therapy sessions could be spread out more to allow for more practice at home between sessions.

Dr. Kummer is Senior Director of the Speech Pathology Department at Cincinnati Children's and Professor of Clinical Pediatrics at the University of Cincinnati Medical Center. She is the current Coordinator of ASHA's Division 5: Speech Science and Orofacial Anomalies and is an active member of the American Cleft Palate-Craniofacial Association. She does many lectures and seminars on a national and international level. She is the author of many professional articles and 11 book chapters. She is also the author of the text entitled Cleft Palate and Craniofacial Anomalies: The Effects on Speech and Resonance, Thomson Delmar Learning, 2001. She is an ASHA Fellow.