Cleft and craniofacial anomalies: Care for children through adults

Cleft lip with or without cleft of the palate is a very common birth defect affecting approximately one in 700 infants born in the United States. Size and extent of the cleft vary between individuals.

The cleft lip is typically repaired between 3 and 6 months of age in a healthy infant. The palate is repaired around 12 months of age, to coincide with development of words. The individual needs and anatomy of your infant determines the type and exact timing of cleft repair. Children might require additional surgeries or other treatments during their life. Our team of specialists coordinates all the care your child needs.

Pierre Robin Sequence is a diagnosis used when the mandible (lower jaw) is small, restricting the position of the tongue in the throat, resulting in airway obstruction. It is frequently associated with isolated cleft of the soft palate. Early surgery in the newborn period can be done to make the mandible bigger and relieve the obstruction. This process is known as distraction osteogenesis.

Patients with hemifacial microsomia might have asymmetric (uneven) facial appearances. Often this is related to the lower jaw (mandible), or asymmetry or malformation of the ears. When the ear does not develop fully, that is called microtia. All these things can require surgical correction, though the timing depends on the individual child and their needs. Goldenhar syndrome is one form of hemifacial microsomia.

The newborn skull has gaps in between the major cranial bones known as “sutures.” These gaps allow the baby to exit the birth canal and allow for a baby’s brain to grow normally in the newborn period. Sometimes one or more of these “sutures” can be fused, known as craniosynostosis. When craniosynostosis is present, the skull is often abnormally shaped. Surgical correction is recommended.

Newborns with clefts and other craniofacial anomalies frequently have difficulty with breastfeeding and standard bottle-feeding. Our team makes specific recommendations for specialty feeding systems for your infant and monitors their progress with feeding.

Children born with craniofacial anomalies such as cleft palate or microtia have a much higher risk of hearing loss, in part due to inadequate Eustachian tube function. Many children with cleft and craniofacial conditions require tubes for drainage of the ear. All children in our clinic undergo frequent monitoring and hearing testing to assure that hearing loss is avoided. Individuals who require hearing aids receive specialized custom-made aids and repair service.

Function of the palate is key to successful speech production. Children with cleft palate require surgery to correct the cleft and careful speech monitoring and sometimes therapy to achieve correct speech quality. Surgeons and speech therapists work closely together with the child to assure voice quality.

Children with complete clefts, hemifacial microsomia and other jaw abnormalities frequently have dental problems that require expansion, orthodontic alignment (braces) and surgery to correct. Infants with excessively wide clefts might require early alignment of the gum lines before initial cleft lip repair.

Craniofacial anomalies are sometimes associated with known genetic (DNA) abnormalities. All newborns, infants and children are clinically screened for the possibility of a genetic link. If certain patterns of facial features are noted, the individual might undergo blood test to determine if a genetic pattern is associated. At the completion/graduation from Cleft and Craniofacial Anomalies Clinic, teenagers have a discussion with the genetics counselor regarding incidence of passing on the craniofacial condition to their children if they choose to begin a family.

Children with craniofacial anomalies are continually monitored for achievement of physical growth, learning delays and psychosocial development. If delays are discovered, the child will be appropriately evaluated and treated, and concerns will be communicated with your child’s primary doctor.

Children with craniofacial differences frequently have concerns over appearance, scars and social acceptance. Our experts assist with any emotional concerns or coping mechanisms throughout their formative years.

Our coordinator helps ensure all patients get the appropriate follow up with our team, schedules appointments and follow-up treatments.

The audiologists routinely screen each child’s hearing acuity and provide recommendations for treatment if hearing loss is detected.

Our dentists and orthodontist work together to provide dental health care and specific treatment recommendations for children whose teeth are affected by a craniofacial abnormality.

Our genetics team is a resource for both parents and children to discuss genetic links to various conditions and recommended individualized testing.

Our team features a nurse specialist who coordinates follow-up treatment for children in the Cleft and Craniofacial Anomalies Clinic and provides parental support for any concerns that arise during your child's care.

Our social worker focuses on adjustment of the child in the school/social settings and provides support to families where needed.

Speech pathologists provide complex testing and therapy if the child has trouble with speaking.

Our surgeons include plastic surgeons, ENT surgeons, and neurosurgeons. They collaborate to ensure your child is receiving the best surgical treatment possible with the fewest number of operations.