Cleft Lip and Cleft Palate

From left to right: Gap in the lip on 1 side (incomplete unilateral cleft lip); gap in the lip and nose on 1 side (complete unilateral cleft lip); gap in the lip on both sides (incomplete bilateral cleft lip); gap in the lip and nose on both sides (complete bilateral cleft lip). Photos by Erik Stuhaug.

Cleft lip is an upper lip that is not completely formed. It affects how the lip works.

• If the cleft only affects the lip, it is called partial or incomplete.
• If the cleft also affects the nose, it is called complete.
• The cleft can be on one side (unilateral) or both sides (bilateral) of the upper lip.
• An alveolar cleft is a cleft that affect the gum line affect how the teeth develop.

Photo by Erik Stuhaug

In cleft palate, a baby is born with a gap in the roof of their mouth (palate).

Cleft palate affects speech and feeding because the muscles at the back of the palate are not formed properly. These muscles are needed to close off the mouth from the nose during feeding and speaking.

In a submucous cleft palate, the gap in the roof of the mouth is covered by a thin layer of soft tissue (mucous membrane). This makes the cleft hard to see when looking in the mouth. But it can affect speech in the same way as a cleft palate.

Cleft lip and palate are among the most common types of birth defects in the United States. 1 in 1000 babies are born with a cleft of the lip and/or palate. Clefting is less common in non-Hispanic black people (1 in 4,000) than in others.

Some kinds of clefts happen more than others:

• Cleft lip (the lip has a cleft, and there may or may not also be a cleft in the palate): about 1 in every 1,500 newborns
• Isolated cleft palate (only the palate is affected): about 1 in every 2,000 newborns

Most (60%) cleft lips and palates are not linked with anything that happens during or after pregnancy. A few of the exceptions are:

• Exposure to the drug phenytoin (Dilantin) during pregnancy: makes cleft lip 10 times more likely
• Smoking while pregnant: makes cleft lip 2 times more likely
• Use of alcohol, antiseizure medicine or vitamin A (retinoic acid): linked with birth defects that include cleft lip and palate

There is a greater chance of having a child with clefting if a parent or sibling has one. Your doctor or counselors at our Craniofacial Genetics Clinic can talk with you about the chance for your family.

Clefting is sometimes part of a syndrome caused by changes in genes. Children with these syndromes also have other medical problems.

More than 40% of children who have cleft palate but without cleft lip have conditions such as van der Woude syndrome, 22q11.2-related disorders, Robin sequence, Stickler syndrome and Treacher Collins syndrome.

From left to right: Gap in the lip on 1 side (incomplete unilateral cleft lip); gap in the lip and nose on 1 side (complete unilateral cleft lip); gap in the lip on both sides (incomplete bilateral cleft lip); gap in the lip and nose on both sides (complete bilateral cleft lip). Photos by Erik Stuhaug.

Cleft lips range from mild to severe. A mild form of cleft lip would be a small notch in the red part of the upper lip (microform cleft lip).

An example of a severe cleft lip would be 2 wide gaps in the upper lip and a collapsed and stretched nose (complete bilateral cleft lip).

In cleft lip:

• The muscle, skin and lining of the lip are missing in the gap of a cleft.
• Those tissues are misplaced on each side of the cleft. They distort the nearby areas of the face.
• Either the nose or one nostril is stretched. This is caused by the pull of muscles on each side of the cleft.

Photo by Erik Stuhaug.

A cleft palate can only be seen when the baby's mouth is open.

There is a gap in the middle of the roof of the mouth.

If your child has a cleft palate but not cleft lip, it may not be noticeable at first. This is true especially if the gap is covered by soft tissue that lines the roof of the mouth. This is called a submucous cleft palate.

The doctor may suggest doing genetic tests to tell whether your child’s cleft lip and palate are part of a condition that causes other signs or symptoms. Examples are van der Woude syndrome, 22q11.2-related disorders, Robin sequence, Stickler syndrome and Treacher Collins syndrome. More than 40% of children with cleft palate but without cleft lip have it as part of a syndrome.

For many babies, the syndrome is caused by a new genetic change that was not inherited from the mother or father. But sometimes a parent has an abnormal gene that is passed on to their child.

Our Craniofacial Genetics Clinic helps identify syndromes. Our genetic counselors help families understand the benefits and limits of genetic testing. If you choose to have genetic testing, counselors explain the results so you can make informed decisions about your child’s care.

There is a greater chance of having a child with clefting if a parent or other child has a cleft lip and/or palate. Your doctor or our genetic counselors can talk with you about the likelihood for your family.

We recommend genetic counseling before your child reaches age 21 so they understand the chance of clefting in any children they may have

Starting soon after birth, we regularly check your child’s weight and growth. Parents often need help with feeding if their baby has a cleft.

• Cleft lip makes it hard for the baby to make a seal with their lips around the nipple. Most often, babies with cleft lip can be fed by breast or regular bottle. We can give you tips on how to hold your baby for better feeding.
• With a cleft palate, the baby cannot get enough suction to suck milk out of the breast or regular bottle. When they suck, the roof of their mouth does not close off the mouth from the nose. Babies with cleft palate usually need special bottles and nipples. We can help you understand the different types. We will teach you feeding techniques so your baby eats enough to grow and thrive.

There are 3 strategies we use for pre-surgical molding before lip repair for babies with cleft lip and palate.

1. Lip taping
2. Lip taping with nasal elevator (NE). The nasal elevator is an added attachment that helps shape the nostril.
3. Nasoalveolar molding (NAM) is like a retainer we put in your baby’s mouth before surgery.

Your craniofacial team may recommend 1 or more of these treatments, depending on your baby’s cleft and their health needs

The goal of molding is to make the gap in the gums and lip smaller before your baby’s cleft lip surgery. It also lifts and shapes the nose. A better result with the first surgery could mean fewer surgeries later in childhood.

For children with wide clefts, we reshape the gums, lip and nose using taping or nasoalveolar molding (NAM) before cleft lip surgery. Seattle Children’s has been performing NAM since 2001.

• In the months before surgery, your baby wears a custom-made molding plate that fits on the gum line.
• The plastic plate gently directs the growth of the baby’s gums. Every 1 to 2 weeks, an orthodontist on our team adjusts the molding plate. Over time, the cleft gets smaller.
• After the cleft has narrowed, a small post may be added to the molding plate and put into your baby’s nostril. The orthodontist slowly adjusts the post to shape the nose cartilage, lift up the nose and open the nostril.

Surgery to repair cleft lip is most often done when your child is 6 months old.

During surgery, the skin, muscle and lining of the lip are put in the proper place.

The nose is also treated at the time of the first surgery, but often needs another small surgery as your child grows.

Most often, surgery takes about 3 hours. You will be able to be with your baby in the recovery room soon after they wake up from surgery. Your child will usually stay in the hospital 1 night.

Bilateral cleft lip repair

• Before (left): The skin needed to do the repair is present, but not in the right place or shape.
• During (center): Surgery puts the skin, muscle and cartilage into the correct position.
• After (right): After 1 year, the lip and nose have relaxed in the new position. The scars are visible as white lines.

We check your baby’s hearing throughout their childhood.

Every year, a specialist trained to test hearing in infants and children (audiologist) will check your child’s hearing. If there are concerns, an ear, nose and throat doctor (otolaryngologist) will see your child.

Most children with cleft palate have fluid buildup behind the ear drum. This can make it harder to hear.

If this is a problem for your child, we recommend inserting small plastic tubes in the ear drum. This keeps the middle ear clear of fluid. It is often done at the same time as surgery to fix cleft palate.

If your child has a cleft palate, we do surgery when your child is between 9 and 15 months.

During cleft palate surgery, the cleft is closed. Muscles at the back of the roof of the mouth (soft palate) are put in their proper place across the cleft.

The goal is to create a palate that works well for speech.

Most often, surgery takes 3 hours. Your child usually will stay in the hospital 1 to 2 nights.

We regularly check your child’s speech ability and how their language is developing. We start even before your child's cleft palate is repaired, as early as 9 months.

Cleft palate affects the muscles needed for normal speech. Your child may have trouble making correct speech sounds, even after the cleft is repaired.

Some children with clefts have a condition called velopharyngeal dysfunction (VPD).

Often, speech therapy helps children develop more normal speech patterns.

Sometimes it helps to use a custom-made speech appliance called an obturator. It looks like a dental retainer with a small bulb at the back.

Some children benefit from further surgery after cleft palate repair. This is likely if your child has a type of VPD called velopharyngeal insufficiency. Your surgeon and speech pathologist will work together to recommend what is best for your child.

Tooth problems are more likely to happen in children with clefts than in other children.

• If a cleft extends through the gum line, it will affect how your child’s teeth develop. They are more likely to have teeth that are misshaped, crowded or missing.
• Children with clefts are at higher risk for cavities. The hard coating (enamel) on their teeth may have weak areas that decay easily. Careful tooth care is important, starting with baby teeth. Your child should have regular visits with your family dentist.

Our orthodontists are a key part of the team.

• Your child is likely to need orthodontic treatment to align teeth if their cleft affects the gum line (the hard palate) or the back of the roof of the mouth (soft palate).
• An evaluation by a craniofacial orthodontist on our team usually occurs by 6 years old. We coordinate dental and orthodontic needs with other treatments to get the best results.
• Orthodontic treatment helps prepare your child if they need surgery for a cleft in the part of the jaw that holds the teeth. The surgery is called alveolar bone graft.
• At 12 to 18 years, your child has final orthodontic treatment to correct their bite and align their teeth. For some children, this will include surgery on the one or both jaws.

Many children with cleft lip and cleft palate also have a cleft in the bone of the upper jaw that holds the teeth. This bone is called the alveolus (al-vee-OH-liss).

An alveolar bone graft is a surgery to fill the gap in that bone. Your child will may need dental and orthodontic treatment before bone graft surgery surgery.

During an alveolar bone graft, the surgeon opens the gum tissue to show the gap in the bone. Bone marrow taken from inside the hip bone is put into the gap. Next, the surgeon puts gum tissue back over the bone marrow and stitches it closed. The cut in the hip is also stitched closed.

After surgery, the bone marrow in the upper jaw will become hard and strong bone. The bone marrow that was taken from the hip will grow back. This happens within about 6 weeks.

This surgery is done when your child is 6 to 9 years. Most often, surgery takes 2 hours. Your child may need to stay in the hospital overnight, but some children are able to go home on the day of surgery.

Surgery to repair cleft lip also treats problems with the nose. But some children need more surgery as they get older.

A child with a cleft may have problems with breathing because the inside of their nose has not formed right. A deviated septum is one example. Most often, surgery (septorhinoplasty) to correct breathing issues and improve symmetry happens during the late teen years.

Sometimes a small nose surgery (rhinoplasty) will be considered during school age. Your surgeon will work with you to decide how best to proceed.

As children near adulthood, some will need jaw surgery to properly align their teeth.

Children with clefting have a greater chance of having their upper jaw grow less than their lower jaw. Your child may have an underbite or abnormal bite (malocclusion). Most often, we recommend Le Fort I maxillary advancement surgery to correct it.

Some children also need surgery for a lower jaw that has not formed correctly (mandible advancement).

We care for more than 1,000 children every year with cleft lip and/or palate. That includes more than 300 children with complex syndromes that involve clefts. Seattle Children’s Craniofacial Center and the Washington State Department of Health produced Cleft Lip and Palate: Critical Elements of Care (PDF) to educate and support healthcare providers. Some families have found this helpful for understanding their child’s care.

We have more surgeons specializing in clefting than any other center in the country. Children come here from around the world to have surgery for cleft lip and palate. We perform more surgeries for this condition than any other center in the region that includes Washington, Alaska, Montana and Idaho.

We start treatment early to provide comprehensive support and to reduce the need for surgeries as your child grows up.

For children with wide clefts we can reshape the gums, lip and nose in the months before surgery using taping and nasoalveolar molding (NAM). Pre-surgery molding may decrease the number of surgeries your child needs because it makes the cleft less severe.

Read about Seattle Children’s expertise in craniofacial surgery.

The Craniofacial Center at Seattle Children’s has experts in every field your child might need. These 50 specialists work together as a team to diagnose and care for all of our patients’ needs.

Your child’s team will include a craniofacial pediatrician, nurse, social worker and surgeon (craniofacial plastic surgeon and/or an ear, nose and throat specialist (otolaryngologist). Depending on your child's cleft and their needs, they may also be treated by a feeding therapist, dietitian, orthodontist, audiologist and speech and language pathologist (SLP).

We care for care for your child’s physical, emotional and comfort needs. Read more about the supportive care we offer.

We provide the treatment that is right for your child at the right time.

If an ultrasound during pregnancy indicates that your baby has cleft lip or cleft palate, we help you understand treatment options that will be possible after birth. We teach you ways to feed your baby so they thrive.

Learn more about how prenatal counseling can help you prepare to care for your child.

As your child grows, we help with feeding and measure their growth. We regularly check their hearing and assess their speech and language development.

We do surgeries to fix your child’s cleft at the right time. We use molding techniques to reduce the extent of surgery your child may need. At school age and into young adulthood, we use orthodontic treatments to correct your child’s bite if needed.

Families face many challenges when their child has cleft lip or cleft palate. We take time to explain your child’s condition and answer all your questions.

We help you fully understand your treatment options and make choices that are right for your family. All through the years, our social workers help your child and your family cope. We put you in touch with resources in your community.

As your child matures, we include them in decisions about their medical care.

Our experts work together and with you and your family’s doctor to coordinate your child’s care. Our team meets weekly to discuss complex patient cases and decide on the best care plan.

Seattle Children’s was the first hospital to develop a clinical care pathway for cleft lip and palate. It outlines what treatment should look like from the time your child is diagnosed until treatment ends.

It is based on the evidence about what is most effective. This gives doctors a blueprint for delivering the best possible care and makes it easier to improve that care.

We have a research team actively working to understand more about the causes of this clefting, and how to ensure the best treatments and outcomes for children born with clefts.

Learn about research at Seattle Children’s into cleft lip and palate.