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How common are they?

• Cleft lip and cleft palate are among the most common birth defects, affecting more than 5,000 newborns a year in the United States, with an incidence of 1 in 700 newborns.

• Cleft lip and cleft palate can occur alone or in association with known genetic conditions. More than 300 other known genetic conditions have been described in which cleft lip or cleft palate may occur.

What are some characteristics of children with cleft lip or cleft palate?

• The cleft, or opening, in the lip or palate is usually identifiable at the time of birth.

• Less commonly, a cleft occurs only in the muscles of the soft palate but not in the lining of the mouth, so there is no visible opening or separation. This is called a submucous cleft palate and may only be diagnosed after a child has complications, such as difficulty with sucking and feeding, nasal regurgitation of milk, recurrent ear infections, or speech disorders.

• Children with cleft lip, with or without cleft palate, can face a variety of complications related to the defect, including

  • Feeding. Babies with cleft palate, and occasionally those with an isolated cleft lip, often have difficulties latching onto the breast or bottle nipple and sucking. This can cause nasal regurgitation (breast milk or formula that comes out of the nose). Often these babies need special bottles and nipples for successful feeding. Most will swallow a great deal of air and require frequent burping. Rarely, special appliances called obturators (a prosthetic device that closes the opening of the cleft) are required.

  • Ear infections and hearing loss. The cleft causes disruption of the normal muscle anatomy of the palate. This interferes with the eustachian tube that connects the middle ear to the back of the throat, and the malfunction can allow bacteria into the middle ear. Thus, babies with cleft palate are susceptible to repeated ear infections, which over time can cause hearing damage if not treated appropriately.

  • Dental problems. If a cleft lip extends through the upper gum and the bone where the teeth are located, the teeth can be missing or abnormal in the area of the cleft.

  • Speech problems. The lip and palate are used in forming sounds, so the development of normal speech can be affected. Hearing problems related to fluid that collects in the middle ear and can cause ear infections can affect speech as well.

  • Psychological problems. Children with cleft lip and or cleft palate are more likely to have social and emotional problems because of their appearance, speech problems, and related family stress.

Who is the treatment team?

• A treatment team that specializes in the care of children with cleft lip and cleft palate should be involved. The treatment team usually includes the child’s primary care provider, a plastic surgeon, a pediatric dentist, a pediatric otolaryngologist (ie, ear, nose, and throat doctor), an audiologist, a speech therapist, and a psychologist or social worker to address family concerns. Other important consultants should include a medical geneticist, an orthodontist, a maxillofacial surgeon, and nurses or occupational therapists who are trained in feeding children with cleft lip or cleft palate.

• Most children with cleft lip will have surgery between birth and 3 months of age to close the lip.

• Cleft palate repair usually occurs by 1 year of age.

• Many children will require follow-up surgeries after age 2.

• For children with cleft palate and a collection of fluid in the middle ear or with recurrent ear infections, ear tubes are placed during the palate surgery to prevent ear infections and hearing loss.

• Children who are younger than 3 years may receive speech therapy through local early intervention programs. Early intervention is a system of services to support infants and toddlers with disabilities.

• Children 3 years and older may receive speech therapy through special education and related services through their local public school system.

What adaptations may be needed?

What should be considered an emergency?

• There are no special emergencies that children with cleft lip or cleft palate face.

• Choking may be a problem in younger children; reviewing first response and first aid training, especially about choking, may be helpful for staff.

What types of training or policies are advised?

• Pediatric first aid training that includes CPR (management of a blocked airway and rescue breathing) with instructional demonstration and return demonstration by participants on a manikin. Pediatric First Aid for Caregivers and Teachers is a course designed to teach these skills.

What are some resources?

• Cleft Palate Foundation, info@cleftline.org, 919/933-9044

• Children’s Craniofacial Association, contactCCA@ccakids.com, 800/535-3643