Frequently Asked Questions
The term “craniofacial” refers to the bones in the head and face. A craniofacial anomaly is a birth defect that occurs in the face or head. Some of these conditions—such as cleft lip and cleft palate—are very common, while others are rare. Severity of the condition varies depending on the abnormality and the child: One child might have a mild case, while another child could be affected quite severely.
While we know how craniofacial anomalies develop, we don’t know exactly why. The facial structures form in the first three months of pregnancy. It is at this time that craniofacial anomalies begin.
It is widely thought that craniofacial anomalies are influenced by factors that include genetics and/or the environment (smoking, substance abuse, vitamin deficiency). We have a geneticist on staff to discuss anomalies related to genetic factors.
Research continues into why these anomalies develop and how to prevent them.
At your first visit, you will meet with a variety of specialists who will be involved in your child’s care. Come prepared with questions and feel free to take notes to refer back to later.
Challenges for most children with a craniofacial abnormality revolve around speech, hearing, feeding, orthodontics, and recovering from reconstructive surgeries. At the Cincinnati Children’s Cleft and Craniofacial Center, we coordinate your child’s care for you. That means if your child needs to be seen by multiple specialists, we’ll arrange that care. Children and teens with a craniofacial anomaly vary in the treatments they need. Specialists who may be involved in evaluating and treating your child include:
The Cleft and Craniofacial Center team works mostly with patients affected with cleft lip and / or cleft palate, Pierre Robin sequence, hemifacial microsomia, syndromic craniosynostoses, and other related craniofacial conditions.
The Infant and Toddler Genetics Craniofacial Clinic is where newborns, infants and toddlers are evaluated. They are seen by a geneticist and advanced practice registered nurse. This clinic ensures that each child receives appropriate medical and dental management. The team closely monitors growth and development, following these children on a regular basis until they are 3 to 4 years old. They are then referred to the craniofacial team for yearly evaluations until treatment is complete.
The Orthognathic Clinic is held twice a month. A craniofacial surgeon and orthodontist evaluate older children who have significant tooth, jaw and mouth abnormalities. These children often require both orthodontic treatment and jaw surgery to correct skeletal misalignment of the teeth and jaws.
Prenatal Counseling
The Human Genetics clinical nurse specialist and geneticist meet with parents who are expecting a baby with a craniofacial condition that has been diagnosed prenatally. Parents are counseled about all aspects of craniofacial care.
Neonatal Airway Management Team
A team of specialists provides consultation and treatment for newborns hospitalized with airway problems such as Pierre Robin sequence.
Feeding Management
Speech pathologists and clinical nurse specialists provide feeding consultation and hands-on instruction for newborns and infants.
Obstructive Sleep Apnea Management
Children seen in the Cleft and Craniofacial Center clinic who are at risk for obstructive sleep apnea (OSA) are referred to the Complex Obstructive Sleep Apnea Center for further evaluation and management.
Many parents are concerned that a birth defect means a mental disability. Most children born with a craniofacial condition are not likely to have other birth defects, including cognitive deficits.
The Cleft and Craniofacial Center suggests a variety of helpful resources where you can find support.
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