What is a Cleft Lip or Palate?

What is a cleft lip and palate?

Normally during pregnancy, the tissues that form the mouth and lips must fuse together. This process happens very early during gestation, often before a woman knows she is pregnant.If these tissues do not form properly, a cleft (gap) results. The cleft can involve one side of the lip (unilateral) or both sides (bilateral). The lip may be affected alone, or there may also be a cleft palate (roof of the mouth). Sometimes a cleft palate occurs without the lip being affected.

Cleft lip and palate is one of the most common kinds of birth defects and the most common kind of problem to occur in the region of the head and neck. Although clefts may occur in any infant, children of some ethnic backgrounds are more likely to have a cleft. Cleft lip/palate in about 1:1000 Caucasian infants, in about 1:500 Asians, 1:300 Native Americans, and 1:2000 African Americans. Cleft palates without cleft lips occur in about 1:2000 infants. About 2/3 of infants with a cleft lip will also have a cleft palate.

Although this is a common birth defect, we still have a lot to learn about what causes clefting.In most cases, this appears to be a random event and is not related to anything a mother does during pregnancy. There is most likely a complicated interaction of genetic and environmental factors that affects clefting. There are some exposures that we believe increase the risk of a baby with a cleft, including dilantin or other anti-epileptic drugs, smoking, poor nutrition, or retinoids.

Parents have an increased risk of having a baby with a cleft if they have already had a baby with a cleft or if one of the parents has a cleft. Your doctor can provide more information about your chances of having a baby with a cleft in a future pregnancy.

Symptoms of a cleft lip/palate

Sometimes a cleft appears as a small notch in the lip with a line that looks like a scar. This is called a microform cleft. In other cases, the cleft may be complete and cause a gap that joins the base of the nose. When the lip alone has a cleft, the lip may not function correctly and the nose may appear to be flattened on the affected side. Speech and feeding are often normal. This is the mildest form of clefting and the development of the teeth is often unaffected.

When the palate has a cleft, there are usually problems with feeding, hearing, and speech. An intact palate is needed to generate enough suction to breast feed or feed from a regular bottle.  These infants will usually feed quite well when they are using the right kind of bottle, but they may have milk come out of the nose before the palate is repaired. The palate is also required for the ears to drain normally, and if the palate has a cleft infants usually have fluid behind their eardrums that may cause hearing loss until the palate is repaired. If the palate has a cleft, the child will have problems generating enough pressure inside the mouth to form sounds normally and some air may escape through the nose.

If the lip has a cleft, this is often detected on ultrasound during pregnancy. It is difficult to determine whether the palate also has a cleft, and the baby must be examined at the time of delivery to evaluate the palate. It is sometimes difficult to determine whether a palate is intact, particularly when there is skin covering the cleft (submucous cleft palate). Because there are some genetic syndromes associated with clefts, your doctor may discuss genetic testing with you to learn more about your baby.

What kind of experience does the team at OHSU have with cleft lip/palate?

We have a multidisciplinary team at OHSU with numerous subspecialists who have expertise caring for children with clefts. Our team includes members from various disciplines, including plastic surgery, otolaryngology, pediatrics, speech and language pathology, audiology, and psychology among others. Our team is the number one referral center in the state for children with clefts and the only team in the state recognized by the American Cleft Palate—Craniosynostosis Association (ACPA). We see 60-80 new infants each year with clefts and follow them through adolescence. We are also the only team in the state to offer Nasoalveolar Molding (NAM).Our team members are dedicated to providing the most advanced care that is suited to your child's individual needs. We meet regularly to discuss the care plans for all patients cared for on our team.