Cleft Lip & Cleft Palate
What are cleft lip and cleft palate?
A cleft lip and cleft palate are openings in a baby's upper lip or roof of the mouth (palate). They're congenital abnormalities (birth defects) that form while a fetus develops in the uterus. Cleft lips and cleft palates happen when tissues of the upper lip and roof of the mouth don't join together properly during fetal development. Surgery is required to repair cleft lip and cleft palate.
What is cleft lip?
Our lips form between four and seven weeks of pregnancy. Tissues from each side of our head join together at the center of the face to make our lips and mouth. A cleft lip happens when the tissues that make the lips don't join completely. As a result, an opening or gap forms between the two sides of the upper lip. The cleft can range from a small indentation to a large gap that reaches the nose. This separation can include the gums or the palate (roof of the mouth).
What is cleft palate?
The roof of your mouth (palate) forms between six and nine weeks of pregnancy. A cleft palate is a split or opening in the roof of your mouth that forms during fetal development. A cleft palate can include the hard palate (the bony front portion of the roof of the mouth) or the soft palate (the soft back portion of the roof of the mouth).
Cleft lip and cleft palate can occur on one or both sides of the mouth. Because the lip and the palate develop separately, it's possible to have a:
- Cleft lip without a cleft palate.
- Cleft palate without a cleft lip.
- Both a cleft lip and cleft palate (the most frequently occurring disorder).
Who gets cleft lip and cleft palate?
Cleft lip and cleft palate are the 4th most common congenital disorder in the United States:
- About 1 in every 1,600 babies is born with cleft lip with cleft palate in the U.S.
- About 1 in every 2,800 babies is born with cleft lip without cleft palate in the U.S.
- About 1 in every 1,700 babies is born with cleft palate in the U.S.
Cleft lips (either with or without a cleft palate) are more common in boy babies. Cleft palate (without a cleft lip) is more common in girl babies.
How will a cleft lip or cleft palate affect my baby?
Babies born with a cleft lip or cleft palate may have difficulties eating (both from the breast and a bottle). They may also have trouble speaking, and they often have fluid behind their eardrum that can affect hearing. Depending on the case, some also have issues with their teeth.
Symptoms and Causes
What causes a cleft lip and cleft palate?
In most cases, there is no cause of cleft lip or cleft palate, and parents can't prevent it. Most scientists believe clefts are caused by a combination of genetic (inherited) and environmental (related to the natural world) factors. There seems to be a greater chance of a newborn having a cleft if a sibling, parent or other relative has one.
Another cause of a cleft lip or cleft palate may be related to medication the birthing parent took during pregnancy. This includes antiseizure medications, acne treatment medications containing Accutane®, or methotrexate, a drug commonly used for treating cancer, arthritis and psoriasis.
Other factors that can contribute to the development of a cleft include:
- Vitamin deficiency (folic acid).
- Having obesity.
- Smoking or tobacco use during pregnancy.
- Substance abuse.
- Birth disorders like DiGeorge syndrome or Pierre Robin syndrome.
The condition may also occur due to exposure to viruses or chemicals while the fetus develops in the uterus.
Diagnosis and Tests
How are cleft lip and cleft palate diagnosed?
Prenatal ultrasound can diagnose most clefts of the lip because clefts cause physical changes in the fetus's face. Isolated cleft palate (no cleft lip present) is detected in only 7% of fetuses with the condition during the prenatal ultrasound because it's difficult to see.
If a cleft has not been detected in an ultrasound before birth, a physical exam of the mouth, nose and palate can diagnose cleft lip or cleft palate after birth.
In some cases, your provider may recommend amniocentesis to check for other genetic conditions. Amniocentesis is a procedure to remove amniotic fluid from the amniotic sac. It helps diagnose other congenital disorders.
When in pregnancy is a cleft lip and cleft palate seen on an ultrasound?
Most healthcare providers detect a cleft lip at your 20-week ultrasound (anatomy scan), which occurs between 18 and 22 weeks of pregnancy. It may be discovered as early as 12 weeks. It's more challenging to detect a cleft palate on an ultrasound.
Management and Treatment
What problems are associated with cleft lip and cleft palate?
Problems with eating, hearing and speech are common in children with clefts. Children may also have issues with their teeth or self-esteem.
With a separation or opening in the palate, food and liquids can pass from the mouth back through the nose. Some babies have difficulty breastfeeding (chestfeeding) or taking a bottle because they can't form a good seal around the nipple.
Children with cleft palate are more prone to fluid buildup in the middle ear (glue ear). If left untreated, this causes hearing loss.
Children with cleft palate may also have trouble speaking. Their voices don't carry well, sound nasally, and the speech may be difficult to understand. Not all children have these problems, and surgery may fix these problems entirely.
Children with clefts are prone to dental problems like cavities and missing, malformed or displaced teeth.
They may be more prone to defects of the alveolar ridge, the bony upper gum that contains the teeth. A defect in the alveolus can:
- Displace, tip, or rotate permanent teeth.
- Prevent permanent teeth from appearing.
- Prevent the alveolar ridge from forming.
- Cause premature loss of erupting canine and incisor teeth.
Emotional or social problems
Children with clefts may be self-conscious or embarrassed about their appearance, even at a young age. This can cause emotional, social or behavioral problems at school and lead to issues with their confidence.
Who treats children who have cleft lip and palate?
Healthcare providers work together to develop a care plan because of the number of oral health and medical problems associated with a cleft lip or cleft palate. Treatment usually begins in infancy and often continues through early adulthood.
Members of a cleft lip and palate team may include:
- A cleft surgeon to evaluate and perform necessary surgeries on the lip or palate.
- Your pediatrician.
- An orthodontist to straighten and reposition teeth.
- A dentist or pediatric dentist to perform routine dental care.
- A prosthodontist to make artificial teeth and dental appliances.
- Speech pathologists to assess speech and feeding problems.
- An otolaryngologist (a head and neck surgeon).
- Plastic surgeon.
- Oral surgeon.
- Audiologist (a specialist in hearing disorders) to check and monitor hearing.
- Social worker/psychologist to support the family and note any adjustment problems.
- Genetic counselors help parents and adult patients understand the chances of having more children with a cleft palate or cleft lip.
How do doctors fix a cleft lip and cleft palate?
Treating cleft lip and cleft palate depends on the extent of the cleft, the child's age and other special needs or health conditions. Surgery is performed at a hospital, and the child gets anesthesia so they are asleep during the procedure.
Cleft lip repair
A cleft lip repair may require one or two surgeries. The first surgery usually occurs when the baby is between 3 and 6 months old. This surgery closes the infant's lip. The second surgery, if necessary, is usually done when the child is 6 months old.
Several techniques can improve the outcomes of cleft lip and palate repairs when used appropriately before surgery. They are non-invasive and dramatically change the shape of the baby's lip, nose and mouth:
- A lip-taping regimen can narrow the gap in the child's cleft lip.
- A nasal elevator helps form the correct shape of the baby's nose.
- A nasal-alveolar molding (NAM) device may be used to help mold the lip tissues into a more favorable position in preparation for lip repair.
Cleft palate repair
A cleft palate repair is performed at 12 months and creates a working palate and reduces the chances that fluid will develop in the middle ears. To prevent fluid buildup in the middle ear, children with cleft palate usually need special tubes placed in the eardrums to aid fluid drainage, and their hearing needs checked once a year.
Up to 40% of children with a cleft palate need further surgeries to help improve their speech. A speech pathologist assesses speech between ages 4 and 5. They may use a nasopharyngeal scope to check the movement of the palate and throat. If surgery is needed to improve speech, this surgery is usually performed around age 5.
Children with a cleft involving the gum line may also need a bone graft when they are between 6 and 10 to fill in the upper gum line so that it can support permanent teeth and stabilize the upper jaw. Once the permanent teeth grow in, a child will often need braces to straighten the teeth and a palate expander to widen the palate.
Additional surgeries could include surgery to:
- Improve the appearance of the lip and nose.
- Close openings between the mouth and nose.
- Help to breathe.
- Stabilize and straighten the jaw.
Possible risks to surgery include bleeding, infection and damage to nerves, tissues or other structures. Surgery is usually successful, and risks are low. Cleft lip surgery leaves a small pink scar that should shade over time and become less noticeable as the child grows.
At what age are cleft lip and palate repairs done?
Most surgeries to repair a cleft lip happen within the 12 months of an infant's life. Surgery to repair a cleft palate typically occurs within the first 18 months. Some children need additional surgeries to make cosmetic repairs to the areas or fix breathing, hearing, or speech issues.
What nonsurgical treatments help cleft lip and cleft palate?
Children often need treatment beyond surgery for cleft lip or palate. Some other treatments their healthcare providers may use are speech therapy and orthodontic treatment.
How do you prevent cleft lips or palates in babies?
Having a baby born with congenital anomalies like cleft lip or cleft palate is unpreventable. However, you can do things to reduce your risk, like avoiding using cigarettes, alcohol, and certain medications. Talk to your healthcare provider if you are concerned about cleft lip or cleft palate.
Outlook / Prognosis
What's the outlook for children who have cleft lip or cleft palate?
Although treatment may take many years and require several surgeries, most children affected by these conditions have a normal childhood. Treatment helps improve speech and feeding issues. Some people may be self-conscious about the shape of their lips or scarring.
Do cleft lips or palates go away?
No, cleft lips and palates don't go away without treatment.
How should the dental care needs of children with cleft lips or palates be met?
Generally, the dental care needs of children who have clefts are the same as other children. However, children with cleft lip and palate may have missing, misshapen or poorly positioned teeth. Some recommendations include:
- Early dental care: Like other children, children with cleft lip and cleft palate require proper cleaning, good nutrition and fluoride treatment to have healthy teeth. Appropriate cleaning with a small, soft-bristled toothbrush should begin as soon as teeth appear. If a soft children's toothbrush doesn't adequately clean the teeth because of the different shape of the mouth and teeth, the dentist may recommend a soft, mouthwash-containing sponge on a handle to swab the child's teeth. Many dentists recommend that the first dental visit be scheduled at age 1 or earlier if there are problems. Routine dental care can begin around 3.
- Orthodontic care: After permanent teeth appear, an orthodontist can further evaluate a child's short and long-term dental needs. Most children with a cleft palate will require palatal expansion around age 6 or 7. After all the permanent teeth erupt, an orthodontist can align the teeth with braces. Orthodontic care is also required in preparation for jaw surgery (orthognathic surgery).
- Prosthodontic care: A prosthodontist may make a dental bridge to replace missing teeth, or special appliances called "speech bulbs" or "palatal lifts" to help close the nose from the mouth so that speech sounds more normal. The prosthodontist coordinates treatment with the oral or plastic surgeon and the speech pathologist.
Frequently Asked Questions
Is a cleft palate genetic?
Some studies suggest cleft lips and cleft palates have a genetic component. If you or your partner were born with a cleft lip or palate, your chance of having a baby with a cleft is around 2% to 8%. If you've already had a child with a cleft lip or palate, your chances of having another child with the condition are slightly higher.
A note from Cleveland Clinic
You may feel concerned when you find out your baby has a cleft lip or cleft palate. In most cases, your baby is healthy, and surgery can help fix the clefts' appearance. Treating children with cleft lips or palates involves fixing the lip and mouth so that they can function correctly. Treatment may also include dental work, orthodontia and speech therapy. If your child is diagnosed with a cleft lip or cleft palate, talk to your healthcare provider about the treatment plan and what to expect. And remember, most children with cleft lip or cleft palate go on to live happy and healthy childhoods.
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