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Cleft lip and/or palate
Cleft lip and cleft palate are birth defects that occur when the lip or mouth do not form properly during pregnancy. This type of birth defect also is called a facial anomaly. A child can have only a cleft lip, only a cleft palate, or both together. A cleft lip involves an opening from the upper lip to one or both nostrils. With a cleft in the palate, the opening in the roof of the mouth connects the oral and nasal cavities. Children with cleft lip or cleft palate often have problems eating and talking.
How common is clefting?
Clefting of the lip is a relatively common facial anomaly. It occurs in approximately 1 in every 700 live births. Most cases (80 percent) occur in males.
There is a wide variation in occurrence in different racial and ethnic groups. The African-American population has a lower incidence (1 per 2,300), and 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 of the face is affected. Twice as many of one-sided clefts occur on the left side than on the right side.
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. An isolated cleft palate (meaning the cleft palate occurs without a cleft lip) is more common in females than males. It is also more frequently associated with other anomalies.
What causes cleft lip and palate?
These birth defects occur very early in the pregnancy, and we do not know exactly what causes them. However, we know that cleft lip and palate is not caused by anything he mother did or didn’t do during pregnancy. If your child is born with this birth defect, it is not your fault.
Prenatal diagnosis of cleft lip and/or palate
Even with modern ultrasound technology, we are not able to detect every cleft lip and/or palate before babies are born. If your doctor discovers that your baby has a cleft lip or palate, he or she may refer you to a maternal-fetal medicine specialist (a doctor who handles high-risk pregnancies). Your maternal-fetal medicine specialists will perform additional ultrasounds to confirm the diagnosis and to evaluate for any other associated anomalies.
How does cleft lip and/or palate affect my baby?
The major effect on newborns is feeding issues. Some infants have only mild trouble, and others have more significant problems. Special bottles and careful positioning of your baby is usually helpful until the lip and/or palate is repaired. Your child’s pediatrician and the craniofacial disorder program at Children’s may be helpful if you have any feeding issues. If you had planned to breastfeed, Children's has lactation consultants who are experienced dealing with babies with special needs.
How does the diagnosis of cleft lip and/or palate affect the pregnancy?
In most cases, the only way a clefting diagnosis affects pregnancies is that mothers will have to undergo some additional tests.
- Ultrasound: Approximately 25 percent of infants with clefts have an associated condition. Therefore, we always recommend a thorough ultrasound exam when we suspect a cleft lip or palate.
- Amniocentesis: Associated conditions can include chromosomal disorders. Your maternal-fetal medicine specialist may recommend an amniocentesis to evaluate your baby’s chromosomes. We perform this test at 16 to 18 weeks gestation. During an amniocentesis, a physician will insert a needle through the abdominal wall into the uterus to remove a small amount of amniotic fluid. We then send the fluid to the lab for testing. Final test results are usually available in 10 to 14 days.
- FISH test: A quick response test, called fluorescence in situ hybridization or FISH, will give preliminary results in 24 to 48 hours. It is quite accurate for the diagnosis of the three most common chromosomal disorders: trisomy 13, trisomy 18 and trisomy 21.
Otherwise, management of your pregnancy will be routine. There are no common issues or complications for mothers when their babies have clefting. Unless your baby has additional issues that will require immediate care after birth, you should be able to deliver your child at your community hospital. We do recommend that you bring your child to see a pediatric craniofacial surgeon after he or she is born so we can talk about treatment options.
How are cleft lip and/or palate treated?
Your baby will need surgery to correct the cleft lip/palate. The exact timing will depend upon the type of cleft.
- We can repair a one-sided lip within the first month, with follow-up surgery at about 6 months of age.
- We normally repair a one- or two-sided cleft lip with partial palate involvement before 6 months of age.
- If your baby has two-sided clefting of the lip and palate, he or she may need some type of orthodontic device to help him or her eat. You will likely need to schedule that surgery within the first 6 months.
- Depending on whether there is involvement of the gums, your baby may eventually need oral surgery to help with dental issues. If the defect is confined to the palate only, this surgery may not be done until 1 year of age.
The Craniofacial Disorder Program at Children’s Wisconsin includes physicians from multiple specialties who can help with all of these treatment options.
What can I expect 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.
We will immobilize your baby's arms using sleeves that keep the elbows from bending. You can remove these sleeves to bathe and/or exercise the arms, but you should leave them on at all other times. The sleeves keep your child from touching his or her face, which helps protect the repair and encourages proper healing.
With a cleft lip repair, 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 after birth?
Yes. We will treat your baby in the newborn nursery if cleft lip/palate is his or her only problem, and you will be able to visit the nursery and have the baby come to your room.
If you had planned to breastfeed your baby, a lactation consultant can answer any questions you may have. She can assist with determining if your baby will be able to take directly from your breast or if he or she 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?
Some babies with clefting have minimal problems and may go home when their mothers are discharged. Others, however, have more difficulties eating, and they may require appliances to assist them with sucking and swallowing. This is usually dependent on the amount of involvement with the palate.
Once you’ve left the hospital, your baby may require more frequent follow-up with a pediatrician to ensure he or she is eating enough and gaining enough weight.
If you deliver at Froedtert & The Medical College of Wisconsin Froedtert Hospital Campus, the plastic surgeon may see your baby in the hospital. 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.
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.
What is my baby's long-term prognosis?
Long-term prognosis for isolated cleft lip/palate is good. However, your baby may have several issues that require follow-up.
- Dental concerns: 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. Also, eruption of the permanent teeth is often delayed.
- Speech problems: 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.
- Nasal and septum deformities: There may be some deformities of the nose and septum (cartilage in the nose that divides it into two sides).
- Hearing problems: Many infants with cleft lip and palate also will have problems with hearing. Most will also need to have tubes placed in their ears to help with chronic ear infections and drainage of fluid. This also helps with their hearing and, ultimately, their pronunciation of words.
What does clefting look like?
Below is an image that illustrates what different types of clefting can look like – both on the face and inside the mouth and nose.
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