The UF Craniofacial Center is dedicated to the care of individuals with cleft palate and other craniofacial conditions. As a University Center we are very active in clinical service, teaching and research.
In 1981, the Florida Board of Regents approved establishment of the Craniofacial Center as a means for providing focus to the many efforts underway at the University of Florida to serve children and adults with craniofacial malformations. The University was already a leader in this arena, having for many years maintained a clinical program for affected individuals throughout Florida and having assembled scholars who were recognized world-wide for their contributions to the body of research relating to these clinical entities.
The University of Florida Craniofacial Center's interdisciplinary team approach consists of many specialists working together to provide the best possible integrated care. Our team consists of health professionals from pediatrics, surgery, clinical psychology, speech-language pathology, otolaryngology, audiology, nursing, pediatric dentistry, oral and maxillofacial surgery, orthodontics and maxillofacial. Other specialties available for consultation to the team include genetics, neurosurgery, ophthalmology and specialists in education.
Because of the high incidence of hearing loss associated with cleft palate and other craniofacial anomalies the UF Craniofacial audiologist is concerned with prevention, early detection and intervention. As hearing impairment is often episodic routine hearing evaluations are desirable which include various measures of hearing sensitivity and ear function.
The UF Craniofacial Center's psychologist provides consultation to parents and children regarding normal child development. For children with facial disorders, consultation is also available to help the child and family cope with the disorder and the required medical treatment. Additional diagnostic assessment is available for the evaluation of emotional, cognitive and behavioral problems or concerns.
Occasionally patients, children and adult, with speech and/or swallowing problems related to velopharyngeal insufficiency are not candidates for intraoral surgery or they do not wish to undergo surgery. Many of these patients can benefit from an oral prosthesis such as a palatal lift or a speech-bulb obturator. In these cases the UF Craniofacial Center's prosthodontist works closely with the other team members, particularly the speech-language pathologist, in order to obtain maximum improvement in the patient's speech and resonance quality.
UFCFC's nurse is interested in the general health of the child. Key roles include coordinating appointments and referrals for patients, providing information of care before and after surgery about feeding strategies. The nurse helps families access resources such as Children's Medical Services for financial assistance as needed.
Oral and Maxillofacial Surgery
The UF Craniofacial Center's oral and maxillofacial surgeon specializes in the diagnoses of oral diseases and reconstruction of the face and jaws. This includes treatment for skeletal malformations, which may be congenital, developmental, syndromic or traumatic. Some of the procedures include orthognathic surgery, alveolar cleft bone grafting, extraction of teeth and the placement of dental implants.
Orthodontics is a discipline in dentistry that is involved with the diagnosis and treatment of positional and growth problems involving the teeth and jawbones. The Center's orthodontist collaborates with other team members to formulate the nature and sequence of treatment, which will achieve optimal esthetic and functional results for the individual after facial growth and treatment is completed. To achieve these goals certain considerations are made to integrate treatment in a timely manner with the dynamics of ongoing craniofacial growth and development during the younger and adolescent years. Treatment may begin during the primary dentition (baby teeth) although most of orthodontic care begins after the permanent teeth have evolved.
The University of Florida otolaryngology team is particularly concerned with the health and function of children's ears and the control of otitis media. Chronic middle ear infection (otitis media) can impair the development certain speech and intellectual skills. If ear and hearing rehabilitation is to have maximum benefit, it needs to begin before six months of age. Our efforts focus on early restoration of normal hearing and preventing middle ear infections from progressing to more serious problems.
The Department of Pediatric Dentistry at the University of Florida provides dental care to children with cleft lip and palate and other craniofacial anomalies. These services include: (1) preventive dentistry through diet counseling, oral hygiene instructions and fluoride therapies; (2) restorative dental treatment to restore decayed, injured or malformed teeth; (3) prosthodontic replacement of missing teeth with transitional fixed or removable partials; and (4) preventive or interceptive orthodontic care through identification, referral or treatment of orthodontic problems at an early age.
The Center's pediatrician and pediatric nurse practitioner are interested in the special needs of children with facial differences. They monitor the child's growth and development and help address any feeding or nutrition concerns. One of their key roles is to develop a comprehensive clinical impression incorporating health, developmental and psychosocial domains. The pediatric team's goal is to provide health promotion, illness prevention, and screening for existing health problems common to children with craniofacial malformation through physical and developmental screening, education of the patient, family, and health care staff and identification of resources within the family and community.
Plastic and Reconstructive Surgery/ Craniofacial Surgery
The evaluation and surgical treatment of children with cleft lip, cleft palate and velopharyngeal incompetence accounts for the majority of our patients. These children frequently require secondary operations in order to refine facial aesthetics and correct malocclusion. Major craniofacial conditions such as craniosynostosis, Crouzon's disease and hypertelorism are managed with neurosurgery faculty. Cranial molding is conducted in conjunction with orthotics.
The Social worker provides supportive psychosocial services to the patient and the family to include financial, educational, social & emotional support. Because we know that having a child with a chronic condition affects all facets of life the social worker makes certain that the needs of the patient & family are being met in order to ensure healthy development.
The role of the speech-language pathologist is to evaluate how well the patient is able to communicate. At a very early age we are interested in the child's language development, both receptive and expressive language skills. We evaluate, with the parent's help, how the child responds to speech and what kind of sounds or words the child is producing. The inability to make certain sounds may be the result of abnormalities of certain oral, nasal, pharyngeal structures.
Not all children who have a cleft lip/palate or other facial disorder will need speech therapy. For those who do our goal is to begin therapy as early as practical and beneficial to the child. The objective is to eliminate as many of the speech problems as possible before the child enters school.
Some speech problems, such as consistent hypernasality and loss of air through the nose, require special instrumentation such as videofluoroscopy (x-ray) and fiberoptic nasendoscopy (small scope inserted into the nose) to enable the speech pathologist to fully diagnose the problem and identify a treatment plan.
Feeding a Newborn
Feeding a newborn with a cleft lip/palate may prove to be challenging and for some parents it can result unnecessarily in frustration- both for the parents and for the baby. More through trial-and-error than through clinical research an effective system for feeding babies with a cleft lip/palate has evolved. Although there may not be a single "correct" strategy of feeding an infant with a cleft there are several simple suggestions which can make feeding much more pleasant for your baby and the caregiver. Because of the cleft palate, your baby cannot suck milk out of a bottle or breast effectively. Babies tend to use a "chewing action" to extract the milk.
Some suggestions for bottle-feeding include:
- A soft nipple is recommended with an x-cut in the opening. Any nipple your child enjoys will work (Premie, Nuk).
- A soft plastic bottle so the caregiver can squeeze the bottle while your baby attempts to suck. The Mead Johnson cleft palate nurser or Haberman feeder are also available through a hospital or clinic.
- Hold your baby in an upright sitting position.
- Your baby will feed more slowly and will need to be burped more frequently.
- At first, it may take up to 45 minutes to feed your baby 3 oz. But the feeding time should decrease as you and your baby get used to the feeding technique.
Because infants with cleft palate have difficulty extracting milk from the bottle and breast, breast feeding can be difficult. Many of our mothers choose to express their breast milk and then feed their infant with the bottle. This takes an extra amount of time so additional support is recommended to help with feeding your infant.
Excellent educational materials are available, including video tapes for parents desiring to learn how to effectively feed their newborn with a cleft palate. If you'd like to obtain a copy of these materials and/or a video tape produced by the UF team, please email Ms. Ginny Dixon-Wood.
FCCN is a unique cooperative between the University of Florida, Children's Medical Services of Florida Department of Health, Regional and Local Family Networks and Florida Health Care Providers.
To assist professionals and the families who care for children born with craniofacial differences; to educate and empower them with knowledge and understanding of the needs of children with cleft lip, cleft palate and other craniofacial conditions.
With the financial help of the Florida legislature FCCN:
- Works cooperatively with professionals and non-professionals throughout the state to provide coordinated family centered care statewide.
- In five regions throughout Florida develops family networks, with the parent of a child with a craniofacial difference or a qualified professional serving as coordinator in each region. The five regions include West Florida, North Central, Jacksonville Area, Tampa Bay Area, and South Florida.
- Works with the CMS area office(s) in each region regarding assistance to parents of newborns with a craniofacial difference;
- Assists in developing effective feeding strategies, obtaining early counseling and specialized feeding supplies (e.g. as bottles and nipples);
- Improves communication with parents of newborn infants with hospitals, physicians, nurses and other professionals.
- Arranges for training sessions for professionals and parents.
- Develops a registry of individuals and agencies served through the network.
- Supports family weekend camps in different regions of Florida: UF Craniofacial Camp close to Gainesville, Camp Boggy Creek in Central Florida, and a camp in Ft. Lauderdale, on the campus of Nova Southeastern University.
If you would like more information about the activities of FCCN, or would like to contact the coordinator in your region, or if you need help with educational materials or feeding supplies, please contact Holly Shenk, RN, CPN at 800-726-2029 or you can email her at UF Craniofacial Center.
University of Florida Craniofacial Camp
Every summer the Center holds a four-day camp for children with craniofacial differences and their families who are followed in local clinics. The camp is designed to help these children develop coping skills and improve self-esteem and self confidence. The camp, which is staffed by our team members and UF graduate students, provides an opportunity for 15-25 families to spend time with these specialists and other families with similar problems in an informal setting where they can ask questions, express concerns and develop friendships. Camp Montgomery, the site of the annual camp, is located on beautiful Lake Crystal, about 40 miles east of Gainesville and the UF campus. This camp features individual cabins for families and staff, a large dining/conference hall, a covered basketball court, and extensive lake frontage for boating, fishing and swimming.
For more information on this camp contact Ms. Ginny Dixon-Wood, camp director.
Contacts and Referrals
A referral for an evaluation by the UF Craniofacial team can be made by a physician or health professional who is concerned that a child may need an evaluation related to his or her craniofacial difference.
Make a Referral
- Holly Shenk, RN, CPN
UF Health Craniofacial Clinic Coordinator
- UF Health Craniofacial Center
Division of General Pediatrics
1699 SW 16th Avenue
Gainesville, FL 32608
Links & Resources
- American Cleft Palate-Craniofacial Association (ACPA) and Cleft Palate Foundation (CPF)
- International Institute For Birth Defects
Information on Cleft Lip and Cleft Palate Support, Research and Prevention
- WIDE SMILES
Cleft Lip and Palate Resource
- The Florida Cleft Palate-Craniofacial Association (FCPA)
- UF Health Plastic Surgery
- Florida Cleft and Craniofacial Network
To obtain a copy of your medical records from UF Health Craniofacial Center, please contact 352-265-7916 for clinic records and 352-594-0909 for hospital records.
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Insurance acceptance varies between physicians and locations and is subject to change. To confirm that a specific physician will accept your insurance, please contact the practice using the telephone numbers listed at the top of the page. A representative will be happy to assist you.
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