Cleft Lip and/or Palate
What is Cleft Lip and/or Palate?
Cleft lip and cleft palate are birth conditions where parts of the mouth or lip do not form completely during pregnancy. A cleft lip happens when the tissue that forms the upper lip does not join fully, creating an opening or gap. A cleft palate occurs when the roof of the mouth does not close completely, leaving a hole between the nose and mouth.
These conditions can happen separately or together. They affect about 1 in 1,600 babies in the United States each year. Clefts range from small notches in the lip to large openings that extend through the lip and into the nose or across the entire roof of the mouth.
Most children born with cleft lip or palate can be treated successfully with surgery and supportive care. Early treatment helps children eat, speak, hear, and develop normally. The condition is usually visible at birth, which means families can start planning treatment right away.
Symptoms
- Visible gap or split in the upper lip or roof of the mouth
- Difficulty feeding or swallowing in infants
- Milk or formula coming out through the nose during feeding
- Nasal-sounding speech as the child grows
- Frequent ear infections or fluid buildup in the ears
- Dental problems including missing, extra, or misaligned teeth
- Hearing difficulties due to middle ear fluid
- Breathing problems through the nose
Most cases are diagnosed immediately at birth through visual examination. Some milder cleft palates may not be noticed until feeding difficulties appear or a doctor examines the mouth more closely.
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Causes and risk factors
Cleft lip and palate occur when facial structures developing in the womb do not fuse together properly. This happens in the first 6 to 10 weeks of pregnancy. The exact cause is often unknown, but research shows it involves a combination of genetic and environmental factors. Some gene changes increase risk, including mutations affecting proteins like LRP4 that guide facial development.
Risk factors include family history of cleft conditions, smoking or drinking alcohol during pregnancy, diabetes in the mother, and certain medications taken early in pregnancy. Lack of folic acid before and during early pregnancy may also play a role. Mothers over age 40 have slightly higher risk. Most babies with clefts have no family history, showing that environmental factors matter too.
How it's diagnosed
Doctors usually diagnose cleft lip and palate through visual examination right after birth. Some clefts can be seen on prenatal ultrasound during pregnancy, typically after 18 weeks. This early detection helps families prepare and connect with specialists before the baby arrives.
After birth, a medical team evaluates the extent of the cleft and checks for related conditions. This team often includes a plastic surgeon, ear nose and throat specialist, dentist, speech therapist, and genetic counselor. Some genetic testing may be recommended to look for gene changes associated with cleft conditions. Talk to your doctor about testing options and specialist referrals for diagnosis and treatment planning.
Treatment options
- Surgical repair is the primary treatment, typically done in stages starting between 3 and 18 months of age
- Special feeding bottles and techniques to help infants get enough nutrition before surgery
- Speech therapy to address speech and language development
- Dental care and orthodontics to align teeth and support jaw growth
- Ear tubes to prevent fluid buildup and protect hearing
- Counseling and support groups for families
- Additional surgeries as the child grows to improve appearance and function
- Team-based care coordinating multiple specialists throughout childhood
Frequently asked questions
Most cases cannot be prevented because the cause is often unknown. However, taking folic acid before and during early pregnancy may reduce risk. Avoiding smoking, alcohol, and certain medications during pregnancy also helps. Talk to your doctor about prenatal vitamins and healthy pregnancy habits.
Most children need several surgeries as they grow. The first repair usually happens in the first year of life. Additional procedures may be needed to improve speech, hearing, dental alignment, and appearance. Your surgical team will create a timeline based on your child's specific needs.
Breastfeeding can be challenging but is sometimes possible with a cleft lip only. Cleft palate usually makes breastfeeding very difficult because babies cannot create proper suction. Special bottles and feeding techniques help ensure your baby gets enough nutrition. A feeding specialist can provide guidance and support.
Genetics play a role but the inheritance pattern is complex. If one parent has a cleft, the chance of having an affected child is 3 to 5 percent. If one child has a cleft, the risk for siblings is also 3 to 5 percent. Most cases occur without any family history.
Many children develop normal or near-normal speech after treatment. Early surgery and speech therapy improve outcomes significantly. Some children need additional procedures on the palate to improve speech quality. Working with a speech therapist from an early age makes a big difference.
Cleft palate affects the muscles that open the eustachian tubes connecting the ears to the throat. This makes it harder for fluid to drain from the middle ear. Trapped fluid leads to infections and can affect hearing. Ear tubes are often placed to prevent this problem.
Initial recovery takes about 2 weeks for most children. Your child will need pain medication and a special diet during this time. Full healing takes several months. Your surgical team will provide specific instructions for feeding, activity restrictions, and follow-up care.
There will be a scar, but skilled surgeons can minimize its appearance. The scar typically fades significantly over time. Additional procedures may be done as the child grows to further improve appearance. Many adults who had cleft lip repair have minimal visible scarring.
Children may have missing teeth, extra teeth, or teeth that come in crooked near the cleft area. The upper jaw may be narrower or grow differently. Regular dental care and orthodontic treatment help address these issues. Many children need braces and may need bone grafting to support dental alignment.
Taking folic acid before conception and during early pregnancy may lower the risk slightly. The recommended dose is 400 to 800 micrograms daily. While this does not eliminate risk entirely, it supports healthy fetal development. Talk to your doctor about appropriate prenatal supplementation before getting pregnant.