Clefting of the lip and/or palate is a birth defect (congenital anomaly) that occurs in the first trimester of pregnancy. It results in the incomplete closure of the lip or palate of the baby. While cleft lips are visible on the face, one must examine the roof of the mouth to see the cleft palate. Clefting can involve either the lip, palate or both. It can also occur on one side (unilateral) or both sides of the mouth (bilateral). The degree of severity can also vary from a very subtle notch at the lip to a widely open cleft extending from the nose to the throat. Clefts lip/palate are the most common congenital anomaly of the head and neck region. It occurs in approximately 1 in 700 births.
Causes of clefts
We still do not know exactly what causes all clefts, and often it is from a combination of genetic and environmental factors. For this reason, clefts are often a random event that we cannot link to one specific cause. The risk of having another child with a cleft depends upon if other individuals within the family also have a history of clefts. Our team has a Geneticist that can closely examine these factors and advise the family of their risks. There are some situations where a cleft lip and/or palate may be associated with a syndrome. This also explains the importance of the Geneticist on our team to help identify when a syndrome may be present and to ensure that the child receives the full work up needed.
Classification of clefts
When describing a cleft we often discuss in detail the structures that are involved:
- Alveolus (gum line, where the teeth erupt)
- Hard Palate (front half of roof of mouth that has underlying bone)
- Soft Palate (back half of roof of mouth that has the palatal muscles)
- Right side
- Left side
- One side (unilateral)
- Both sides (bilateral)
- Degree of Severity
- Complete (extends across the entire lip or palate)
- Embryological location
- Primary palate
- Secondary Palate
Multidisciplinary team approach
The national American Cleft Palate-Craniofacial Association (ACPA) sets the national standard of treatment and stresses the importance that a multidisciplinary team approach is the best way to treat children born with a cleft lip/palate. Our team, MUSC Craniofacial Anomalies & Cleft Palate Clinic, is nationally accredited by ACPA and we adhere to the principles set forth by them.
The team is composed of multiple sub-specialists, who can treat the needs of each child. Because the severity of clefting varies in each child, the team treats each child for his/her specific needs. The specialties that make up the team include:
- Speech Therapy/Pathology
- Oral Maxillofacial Surgeon
- Otolaryngologist (ENT Surgeon)
- Facial Plastic/Plastic Surgeon
- Social Worker
- Team Coordinator
Our team holds a monthly clinic where the child can be seen by all specialists in one location, to answer and treat the needs of the child. This helps reduce the multiple clinic appointments the family would need to attend to treat their child’s needs and allows for the craniofacial team to discuss as a group about the child’s cleft to create a single comprehensive plan.
Timing of Care
Below is a general timeline of some of the treatments a child with a cleft may need. Every child is treated individually and may have alterations on timing or interventions.
Prenatal to birth
- Genetic counseling
- Speech pathology consultation for feeding baby with a cleft
Zero to five months
- Speech pathology follows for feeding and growth
- Monitor hearing
- Nasoalveolar molding if needed (NAM)
- Cleft lip repair
- Ear tubes if fluid in ears
Nine to 12 months
- Cleft palate repair (Palatoplasty)
- Ear tubes if fluid in ears persist
One to four years
- Introduction to Pediatric dentist
- Assess language development
Four to six years
- Speech pathology assesses if surgery needed to correct speech for velopharyngeal insufficiency (VPI)
- Speech corrective surgery
- Lip revision if needed
- Minor nasal surgery if needed
Six to 12 years
- Orthodontics (Dental appliances and “braces”)
- Assess school/psychosocial adjustment
- Alveolar bone grafting
12 to 21 years
- Orthodontics (“braces”)
- Orthognathic surgery to correct facial structure and jaw
- Major nasal surgery (rhinoplasty)
- We have a team coordinator who helps coordinate any appointments or medical studies a child may need.
- If a prenatal ultrasound detects a possible cleft, we offer prenatal counseling to the parents to help them prepare for the birth of their child and to answer questions they may have about the impact of a cleft lip or palate.
- Prenatal counseling is very valuable because it enables the parents to deliver the child at their local hospital, and allow them to feel ready for how to feed their child after birth.
- The biggest goals after birth are to ensure that the child is feeding easily and growing. A child with a cleft palate cannot create adequate suction to normally breast feed or bottle feed on a regular bottle. A special cleft bottle is provided to the family that allows the baby to feed with ease, and without the baby having to generate suction. When there is only an isolated cleft palate or lip, there should be no need for a tube placed in the child’s mouth to provide feeding.
- After the baby is feeding well, the cleft lip surgery and the cleft palate surgeries are planned and usually occur within the first year of life (see above chart).
- Early in life, one of the main goals is to ensure clear speech development and becomes the emphasis of treatment as the child starts talking
- As your child develops permanent teeth, one of the main goals is to ensure proper dental alignment.
Cleft lip repair
Cleft lip repair is typically performed when your child is 3months of age or weighs ten pounds. Depending on the size of the cleft, additional steps may be needed such as “taping” of the lip or “nasoalveolar molding” (NAM), which start soon after birth. The main goal of the lip repair is to close the cleft, recreate the natural muscle alignment and lip shape. It can be difficult to make the lip and nose look symmetric to the opposite side. Sometimes “touch up” surgery (revision surgery) may be needed when your child is older.
Cleft palate surgery is usually performed between 9 to 12 months of age. As with the cleft lip, sometimes this timing may alter based on the specific needs of your child. Ideally the palate is repaired before your child begins speaking. The goal of the surgery is to close the cleft in the roof of the mouth and place the muscles into the natural position to improve speech and feeding.
Schematic illustration of incisions involved with Furlow cleft palate repair