Although more than 180 different medical and clinical problems have been reported for 22Q-velocardiofacial syndrome, a handful of recurrent, specific issues faced by patients with 22Q-VCFS require identification and management.
The 22Q-Velocardiofacial Syndrome Center at Cincinnati Children’s offers basic information for healthcare professionals to help them understand and diagnose this complex condition.
Cleft palate and submucous cleft palate are seen in approximately 10 percent of children with 22Q-VCFS. These children require management by a comprehensive center, such as the Craniofacial Center at Cincinnati Children’s. Even in the absence of an anatomic palate abnormality, speech disorders are very common in children with 22Q-VCFS; more than 85 percent of patients are affected. Problems include verbal apraxia, dysarthria and velopharyngeal dysfunction with hypernasality. Treatment of the speech issues, especially velopharyngeal dysfunction, requires experienced and specially trained individuals who can identify and treat these conditions.
The Velopharyngeal Insufficiency (VPI) Clinic and the Division of Speech-Language Pathology at Cincinnati Children’s are both capable of caring for these patients. Approximately 15 percent of children evaluated and treated by the VPI Clinic have 22Q-VCFS, of whom half have not been previously diagnosed with this disorder.
Because of the cleft palate or submucous cleft palate and the oromotor apraxia seen in many infants with 22Q-VCFS, feeding disorders and failure to thrive are common. Many children require specialized feeding interventions including the use of cleft palate bottles, and speech and occupational therapy to treat the feeding issues. In addition, many children will require calorie supplementation for adequate growth.
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