The Kapiolani Cleft and Craniofacial Center (KCCC)
July is National Cleft and Craniofacial Awareness Month and KCCC’s goal this month is to spread awareness about these conditions and highlight the unique services offered to those born with an orofacial cleft here in Hawaii.
About 1 in 600 children are born with an orofacial cleft in the U.S. A cleft is a gap in the lip or the palate (roof of the mouth). A team based multidisciplinary approach is the best way to recognize and treat a child born with a cleft.
The Kapiolani Cleft and Craniofacial Center (KCCC) is the major referral center in Hawaii for cleft and craniofacial related problems. Not only do we treat the majority of children with cleft and craniofacial related conditions in the state, but children travel from Guam, American Samoa and Micronesia to receive care at Kapiolani.
Kapiolani Cleft and Craniofacial Center is one of the approved American Cleft and Craniofacial Association teams, which provides a standard for team care. It is widely known that children born with clefts and craniofacial conditions are best managed by a multidisciplinary team to provide complex and specialized care in a coordinated team environment. Our experienced team of surgeons and providers at the Kapiolani Cleft and Craniofacial Center individualizes current and long term treatment plans for each child.
The mission of the Kapiolani Cleft and Craniofacial Center is to provide each child born with a cleft or craniofacial condition with exemplary family centered care so that he/she will have the same opportunities in life as any other child.
Kapiolani's Cleft and Craniofacial specialists have been transforming the face of children's health, one smile at a time. See images of real patients below:
What We Treat
We treat cleft and craniofacial conditions of the head and face including but not limited to conditions such as a cleft lip, cleft palate, craniosynostosis and microtia.
A cleft lip is a separation in the upper lip and cleft palate is a hole in the roof of the mouth. They are some of the most common birth anomalies found in the United States.
Craniosynostosis is a condition in which the bones of the baby’s head fuse too early. This condition requires management and treatment by a Craniofacial surgeon.
Microtia is the underdevelopment of the ear and atresia is the underdevelopment of the ear canal which can cause hearing problems.
While clefts are the most common type, various other conditions can occur. Conditions treated at Kapiolani include:
- Cleft lip and cleft palate
- Pierre Robin Sequence
- 22q11.2 deletion syndrome
- Crouzon Syndrome
- Apert Syndrome
- Hemifacial Microsomia/Goldenhar
- Treacher Collins
- Pfeiffer Syndrome
- Other conditions
A Comprehensive Approach
Employing a multidisciplinary approach, the dedicated team of specialists works to provide a comprehensive plan of care for the long-term health of each child. A team-based multidisciplinary approach is the best way to recognize and treat the full spectrum of challenges associated with cleft and craniofacial conditions, including dental issues and those related to speech and language skills.
Members of the Kapiolani Cleft and Craniofacial Team include:
- Craniofacial surgeon
- Genetics Team – geneticist and/or genetic counselor
- Occupational therapist
- Oral surgeon
- Speech pathologist
- Pediatric dentist
- Plastic surgeon
- Children with Special Health Needs Program – nurse or social worker
- Pediatrics Team – pediatricians and pediatric nurse practitioner
- Behavioral health nurse practitioner
- Social Worker
- Otolaryngologist (ENT)
How to refer to KCCC and Your Team Appointment Day
Your child’s primary physician can make a referral to the Clinic before your baby leaves the hospital or after discharge. This should be done by contacting Kapiolani Cleft and Craniofacial Center (KCCC) at (808) 983-8500, option 1. Neighbor island residents may call toll free at (866) 928-7927.
Patients are seen in the Multidisciplinary Clinics on the 3rd floor of the Diamond Head Tower. These visits can take between 2-4 hours. During the team appointment, your child will see specific specialists. There may be team members who do not examine your child at every visit but who still offer expert consultation or advice during the team conference. The benefit of arranging a team visit is that a patient will be provided with a comprehensive, coordinated care plan in one visit rather than multiple visits with different providers.
Parents and the child’s primary physician will receive a copy of the team report and plan of care. Parents are encouraged to discuss the plan with their child’s doctor.
Kapiolani Cleft and Craniofacial Clinic: 1-808-983-8500, option 1
Neighbor Islands call toll free: 1-866-928-7927
Lifetime of Smiles Hawaii
Lifetime of Smiles Hawaii is a support group for families and their children who have congenital cleft lip, cleft palate or craniofacial needs. The group meets throughout the year. It is a place for families to connect and share. Featured guest speakers provide helpful information. The support group is open to all Oahu and Neighbor Island families. Join the Facebook group today.
Children with Special Health Needs Program (CSHNP) – Department of Health
A CSHNP nurse or social worker will meet and talk to parents about community resources and services. They will assist with referrals or help to coordinate other services to meet the needs of the child and family. Limited financial assistance is also available for outpatient services, medical specialists and Neighbor Island travel to Honolulu for specialty care if these are not covered by a patient’s health plan. Please call 1-808-733-9055 for more information.
Early Intervention Services
If there are any concerns for potential developmental delays, children up to age 3 qualify for free services through the Department of Health’s Early Intervention Services Program. This program assists with speech, occupational and physical therapy, early childhood education and case management. Call the Hawaii Keiki Information Service System (H-KISS) at 1-808-955-7273 for enrollment information. From Neighbor Islands call 1-800-235-5477.