Cleft Lip and/or Palate 

What is cleft lip and cleft palate?
Clefting of the lip is a relatively common facial anomaly occurring in approximately 1 in every 700 live births. Most cases (80 percent) occur in males. There is a wide variation in occurence in different racial and ethnic groups. The African-American population has a lower incidence (1 per 2,300) whereas the Japanese and Native Americans have an increased incidence (1 per 580 and 1 per 280 respectively). In 80 percent of cases, only one side is affected, with twice as many of these occurring on the left side. A cleft lip involves an opening from the upper lip to one or both nostrils. 

A cleft lip can occur alone or together with a cleft palate. The palate is the roof of the mouth.  A cleft palate with or without a cleft lip occurs in approximately 1 per 2,500 births. With a cleft in the palate, the opening in the roof of the mouth connects the oral (mouth) and nasal cavities.  An isolated cleft palate is more common in females than males and is more frequently associated with other anomalies.

These birth defects occur very early in the pregnancy. We know that cleft lips and/or palates are not caused by anything the mother did or did not do during pregnancy.

Prenatal diagnosis of cleft lip and/or palate
A cleft lip and/or palate is still not always detected prenatally (before the baby is born) during a routine ultrasound.  If it is discovered, your obstetrician may refer you to a specialist that handles high-risk pregnancies. These doctors are called perinatologists. More ultrasounds will beperformed to verify the diagnosis and to evaluate for any other associated anomalies.

How does cleft lip and/or palate affect my baby?
The major affect on newborns is feeding issues. Some infants have only mild trouble and others may have more significant problems. Special bottles and careful positioning of the baby will usually be helpful until the lip and/or palate is repaired. Your pediatrician and the Craniofacial Center may be helpful with any feeding issues.  If you had planned to breastfeed, Children's Hospital has lactation consultants who are experienced dealing with babies with special needs. 

How does the diagnosis cleft lip and/or palate affect the pregnancy?
Approximately 25 percent of infants with clefts have an associated condition.  Therefore a thorough ultrasound exam is always recommended when a clefting is suspected.  

The diagnosis of a cleft lip can be confirmed by ultrasound exam performed at a facility familiar with prenatal diagnosis. A cleft palate is more difficult to diagnose prenatally. 

Associated conditions can include chromosomal disorders. The perinatologist may recommend an amniocentesis to evaluate the fetus' chromosomes.  This test is done at 16 to 18 weeks' gestation.  During an amniocentesis, a needle is inserted through the abdominal wall into the uterus and some amniotic fluid is removed and sent to the lab.  It will usually take 10-14 days to get the final results. A quick response test called fluorescence in situ hybridization or FISH, will give preliminary results in 24 to 48 hours and has been found to be very accurate for the diagnosis of the three most common chromosomal disorders, trisomy 13, trisomy 18, and trisomy 21.

Otherwise the management of the pregnancy is routine. There are no common issues or complications for the mother. The babies with isolated clefting can be delivered at their community hospital and be followed up after delivery by a pediatric craniofacial surgeon.    

How are cleft lip and/or palate treated?
The baby will need surgery to correct the cleft lip/palate. The exact timing is dependent on the type of cleft.  A one-sided lip repair can be repaired within the first month with follow-up surgery at about 6 months of age. A one- or two-sided cleft lip with partial palate involvement is usually done before six months of age. A two-sided clefting of the lip and palate may require some type of orthodontic device to help the baby eat. The surgery is usually scheduled within the first six months. Depending on the involvement of the gums, the baby may eventually need oral surgeries to help with dental issues. If the defect is confined to the palate only, the surgery may not be done until one year of age. The Craniofacial Clinic is multidisciplinary center that can help with all of these treatment options. 

What about after surgery?
After surgery your baby will have an IV to provide fluids, medication and nourishment until he or she is able to eat. Some of your baby's medications may include antibiotics to prevent infection and pain medication. Your baby's arms will be immobilized by sleeves that keep the elbows from bending. These can be removed to bath and/or exercise the arms but should be left on to protect the repair for proper healing.  This prevents the baby from rubbing his/her mouth. With a cleft lip you will see a line of stitches on the upper lip.  The lip will appear swollen for several days. There may be some oozing of blood from the incision line. With cleft palates, all stitches are inside the mouth. 

Will I be able to help care for my baby?
Yes. Your baby will likely go to the newborn nursery and be treated there if cleft lip/palate is his or her only problem. The plastic surgeon may see himor her in the hospital if you deliver at Froedtert. If you do not deliver at Froedtert or the plastic surgeon does not see your baby before he or she goes home, please call to set up an appointment as soon as possible. If you had planned to breastfeed your baby, a lactation consultant can answer any questions you may have. She can assist with determining if the baby will be able to take directly from your breast or if they would do better with a bottle with a special nipple. She can help you to pump your breasts while you are still in the hospital. Your milk can be frozen and stored until your baby is ready for it. Breast pumps are available for use while you are in the hospital.

When can my baby go home?
After birth most of these babies go home within the standard timeframe of the mother's stay. These infants may require more frequent follow-up with a pediatrician to ensure they are eating enough and gaining weight.   

After surgery, your baby will be able to go home when he or she is able to take in enough food to maintain weight and grow. Some babies have minimal problems and they may go home with you. Others, however, have more difficulties eating and appliances may be needed to assist them with sucking and swallowing. This is usually dependent on the amount of involvement with the palate. 

What is my baby's long-term prognosis?
Long-term prognosis for isolated cleft lip/palate is good. There may be several issues that require follow-up. One issue could be dental problems such as missing, extra or malpositioned teeth. Almost all children with a cleft palate will require braces on their permanent teeth.  Eruption of the permanent teeth is often delayed.  

As many as 25 to 35 percent of children with cleft lip and palate have speech problems that necessitate a secondary palate surgery and speech therapy.  Any baby with a cleft palate should be evaluated by a speech therapist. There may be some deformities of the nose and septum (cartilage in the nose that divides it into two sides). Many infants with cleft lip and palate will also have problems with hearing. Many will need to have tubes placed in their ears to help with chronic ear infections and drainage of fluid.  This also assists with their hearing and ultimately their pronunciation of words.

Various types of cleft lip and palate.