The team should include experienced specialists in a variety of disciplines relating to your child’s condition. The composition of a craniofacial conditions team varies from one institution to another, but usually includes: a plastic surgeon, maxillofacial surgeon, neurosurgeon, nurse-specialist, orthodontist, dentist, otolaryngologist, (ENT), speech-language pathologist, mental heath professional, geneticist, and possibly other pediatric subspecialists as well. Teams with experience and high volume are often found in large children’s hospitals or university-affiliated medical centers with large pediatric services.
Look for teams that offer psychological evaluation and counseling for patients and family members. The team should also routinely test patients for learning disabilities, make patients’ complete medical histories available to all teams members, put treatment plans in writing, and issue regular progress reports. Most teams also make dental molds and casts when necessary, and include hearing tests and ear exams as a part of their evaluation of patients. You might also inquire whether the team periodically assesses their protocols for care, has ongoing clinical research projects, or even ask to see publications of their work.
A complete listing of U.S. and Canadian craniofacial and cleft lip and palate teams is available on request from the American Cleft Palate/Craniofaial Association.
To determine which of these teams might be best for you, ask your pediatrician, call your local hospital’s pediatric department, or contact the nearest major pediatric teaching hospital directly. Internet bulletin boards can also be a good source of information and support from other parents whose children have craniofacial conditions. Your health insurance company or heath maintenance organization may also be of help.