Cleft Lip and Palate
Cleft lip and cleft palate are among the most common birth defects, affecting around one in every 700 babies worldwide. These conditions occur when parts of the baby’s face don’t join together properly during development in the womb, but with proper treatment and care, children born with clefts can lead healthy, normal lives.
Table of contents
- What are cleft lip and cleft palate?
- How common is this condition?
- When clefts occur during pregnancy
- What causes cleft lip and palate?
- How clefts are diagnosed
- Problems related to cleft lip and palate
- Treatment options
- The importance of team care
What are cleft lip and cleft palate?
A cleft lip and cleft palate are openings or splits that occur in a baby’s upper lip or the roof of the mouth. These are birth defects (conditions present from birth) that form while a baby develops in the mother’s womb.[1]
A cleft lip is an opening or split in the upper lip. The opening can be small, like a tiny notch in the colored part of the lip, or it can be a large gap that extends from the lip all the way up into the nose. A cleft lip can affect one side of the mouth (called unilateral) or both sides (called bilateral).[2] Sometimes, a cleft lip can also affect the gum where the teeth come through.[8]
A cleft palate is a gap or opening in the roof of the mouth. The roof of the mouth is made up of two parts: the hard palate at the front (the bony part) and the soft palate at the back (the softer part toward the throat). A cleft palate can affect just the soft palate, or it can involve both the soft and hard palate.[3]
A baby can be born with just a cleft lip, just a cleft palate, or both a cleft lip and palate together. When a baby has both, this is the most common combination.[3]
How common is this condition?
Cleft lip and cleft palate are common birth defects. In the United States, about 1 in every 1,050 babies is born with cleft lip with or without cleft palate. About 1 in every 1,600 babies is born with cleft palate alone.[2]
Around the world, approximately one in every 700 to 1,000 babies is born with some form of cleft.[8] The occurrence varies by population. In the United States, clefts are more common in American Indian or Alaskan Native, White, and Asian or Pacific Islander populations, and less common in Hispanic and Black populations.[6]
Cleft lip (with or without cleft palate) is more common in boys. Cleft palate without a cleft lip is more common in girls.[3]
When clefts occur during pregnancy
Clefts occur very early in the development of the baby, often before a woman even knows she is pregnant. The crucial time for head and face development happens between the 3rd and 12th week of pregnancy.[7]
During early pregnancy, the baby’s face develops from different parts that grow separately and then join together. The lips normally form between the 4th and 7th weeks of pregnancy. The roof of the mouth forms between the 6th and 9th weeks.[3] If the tissue doesn’t join together completely during this time, a cleft forms.[2]
A lip typically fuses within 8 to 10 weeks after conception, and a palate usually fuses within 10 to 12 weeks.[7]
What causes cleft lip and palate?
In most cases, no one knows exactly what causes a cleft lip or palate. It is very unlikely to have been caused by anything the mother did or didn’t do during pregnancy.[4] Most experts believe clefts are caused by a combination of genetic (inherited) factors and environmental factors.[3]
Genetic factors mean things inherited from family members. Sometimes clefts run in families—there is a greater chance of a newborn having a cleft if a sibling, parent, or other relative has one.[3] A gene defect inherited from one or both parents can prevent the lips and mouth from joining properly during development in the womb.[2]
Sometimes a cleft occurs as part of a genetic syndrome, which is a condition that causes more than one symptom or defect in the body. Cleft lip or palate are found in more than 400 syndromes, including Waardenburg, Pierre Robin, and Down syndromes. Approximately 30 percent of cleft defects are associated with a genetic syndrome.[2]
Environmental factors are things that happen before or during pregnancy that can affect how a baby develops. Several factors may increase the risk of having a baby with a cleft:[5][4]
- Smoking during pregnancy
- Drinking alcohol while pregnant
- Obesity during pregnancy
- A lack of folic acid during pregnancy
- Taking certain medications in early pregnancy, such as some anti-seizure medications or acne medications containing Accutane
- Being a teenager or over 35 years old
- Exposure to certain viruses or chemicals during pregnancy
How clefts are diagnosed
A cleft lip can often be seen before birth during a routine ultrasound (a test that uses sound waves to create pictures of the baby). Healthcare professionals may be able to detect a cleft lip beginning around the 13th week of pregnancy, though it may become easier to see as the baby continues developing.[11] A cleft lip is usually picked up during the 20-week screening scan done when a woman is between 18 and 21 weeks pregnant.[4]
Cleft palate is much harder to detect on an ultrasound scan before birth.[4] Some types of cleft palate are not easily visible and might not be diagnosed until later in life.[2]
If a cleft is not found before birth, it is usually seen right away when the baby is born or during the newborn physical examination done within 72 hours of birth.[4] A nurse, doctor, or parent may notice that the lip or the top of the mouth looks different.[1]
When a cleft lip or palate is diagnosed, parents will be referred to a specialist team who can explain the condition, discuss treatments, and answer questions.[4]
Problems related to cleft lip and palate
Children with a cleft lip or cleft palate may experience several challenges, especially in the first months of life before surgery. The problems depend on the size and type of the cleft.[2]
Feeding difficulties are common. A baby with a cleft lip and palate may be unable to breastfeed or feed from a normal bottle because they cannot form a good seal with their mouth. They may struggle to create suction, which means they might take in a lot of air and milk may come out of their nose.[4] Special feeding techniques and bottles may be needed. Parents can work with a specialist nurse or feeding therapist to learn how to feed their baby properly.[10]
Hearing problems can occur. Babies with a cleft palate are more likely to develop a condition called glue ear, where fluid builds up in the ear. This can affect hearing.[4] Children with cleft lip or palate are also more likely to have ear infections.[2] Regular hearing tests are important, and if necessary, small tubes called grommets may be placed in the ears to drain the fluid, or hearing aids may be fitted.[4]
Dental problems are common. A cleft can mean a child’s teeth don’t develop correctly. Teeth may be tilted, out of position, missing, or there may be extra teeth. Children may be at higher risk of tooth decay.[4] Regular dental care and sometimes orthodontic treatment (such as braces) will be needed.[10]
Speech and language problems can develop if a cleft palate is not repaired. Children may have speech that is unclear or sounds nasal.[4] As they grow older, they may have speech and language delays.[2] Speech therapy can help address these issues.[4]
Breathing difficulties may occur in some babies, particularly those with a small lower jaw.[8]
Most of these problems improve after surgery and with treatments such as speech therapy, dental care, and hearing support.[4]
Treatment options
Treatment for cleft lip and palate begins early and continues as the child grows. The main treatment is surgery, but children will also need other types of care.[4]
Surgery for cleft lip
Surgery to repair a cleft lip is usually done when the baby is around 3 to 6 months old.[4] The baby is given a general anesthetic (so they are unconscious during the procedure). The surgeon repairs and closes the cleft lip with stitches. The operation usually takes 1 to 2 hours, and most babies stay in the hospital for 1 to 2 days.[10]
The child will have a scar, but the surgeon tries to line it up with the natural lines of the lip to make it less noticeable. The scar should fade and become less obvious over time.[10]
Surgery for cleft palate
Surgery to repair a cleft palate is usually done when the baby is between 6 and 12 months old.[10] This timing is important because it helps prevent speech problems as the child develops. The surgery closes the gap in the roof of the mouth and rearranges the muscles and lining of the palate. The operation is done under general anesthetic and usually takes about 2 hours. Most children stay in the hospital for 1 to 3 days.[10]
Additional surgeries
Many children will need additional surgeries as they grow older. These may include:[10]
- Surgery to repair a cleft in the gum using a piece of bone (called a bone graft), usually done around 8 to 12 years of age
- Surgery to improve the appearance and function of the lips and palate if the original surgery did not heal well
- Surgery to improve the shape of the nose
- Surgery to improve the appearance of the jaw if it is small or set back
Other treatments
Children with cleft lip or palate need support beyond surgery:[4]
- Feeding support in the early months, with advice on positioning and special bottles
- Hearing tests and treatment for ear infections or glue ear, which may include grommets or hearing aids
- Speech therapy to monitor speech development and help with any speech problems
- Dental and orthodontic care to monitor tooth development and alignment, which may include braces
The importance of team care
Children with cleft lip or palate receive the best care from a specialized team of healthcare professionals. This cleft team works together from the time of diagnosis through young adulthood.[16]
The team typically includes:[16]
- Surgeons who perform the cleft repairs
- Nurses who provide care and support
- Speech therapists who help with feeding and speech development
- Dentists and orthodontists who care for teeth
- Ear, nose, and throat doctors who manage hearing problems
- Psychologists who provide emotional support
- Genetic counselors who can help families understand the causes
The family is an important part of this team. Parents will work closely with these specialists and attend regular appointments as their child grows up.[16] These appointments usually continue until the child is around 21 years old, when they are likely to have stopped growing.[10]
With proper treatment and care, most children with cleft lip or palate do well and lead healthy lives.[5] After a series of surgeries and treatments, the lips and palate work as they should, and the child’s appearance is much improved. Usually, only slight scarring occurs.[1]