Cleft Lip and Cleft Palate

Cleft lip and palate are among the most common congenital conditions in the United States. One in 700 babies is born with a cleft of the lip, the palate or both. 

Most cleft lips and palates (60%) are not linked with anything that happens during 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) during pregnancy: linked with congenital conditions that include cleft lip and palate

The chance of having a child with clefting is higher if:

• Either parent has a cleft
• Either parent has already had a child with clefting

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

If your child has cleft lip and palate with no other signs or symptoms of a health concern, they probably do not need genetic tests. If they do have other signs or symptoms, like trouble swallowing safely, the doctor may suggest genetic tests to tell if the cleft lip and palate are part of another condition. Examples are van der Woude syndrome, 22q11.2-related disorders, Robin sequence, Stickler syndrome and Treacher Collins syndrome.

More than 40% of children who have cleft palate without cleft lip have it as part of a syndrome. A syndrome is less common in children with cleft lip.

For many babies, the syndrome happens because of 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.

For babies who have a complete cleft lip (connecting to the nostril), molding is a way to make the gap in the gums and lip smaller before your baby’s cleft lip surgery. Molding also lifts and shapes the nose. This may help improve the result of your child’s first surgery. A better result could mean fewer surgeries later in childhood.

If your baby has an incomplete cleft (not connecting to the nostril), they will not need molding before surgery.

We use 3 methods of molding:

1. Lip taping
2. Lip taping with a nasal elevator. The nasal elevator is an attachment that helps shape the nostril.
3. Nasoalveolar molding. In this method, we use a custom-made, plastic molding plate that goes in your baby’s mouth like a dental retainer. 

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

Your craniofacial team may recommend 1 or more of these methods of pre-surgical molding (PDF) (Spanish), based on your baby’s cleft and their health needs. If your family lives too far away for the frequent orthodontist visits needed for nasoalveolar molding, we will teach you how to get good results with taping.

At Seattle Children’s, most children with cleft lip have surgery to repair it when they are 6 months old. We recommend waiting until this age because:

• It reduces the risks of being under anesthesia.
• It means your baby can get ibuprofen as well as acetaminophen to help with any pain. This way babies need less narcotic pain medicine.  

A surgeon puts the skin, muscle and lining of the lip in the typical place. They also treat the nose during the same surgery.

Surgery usually 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.

To breathe the same through both nostrils as they grow, some children have another small nose surgery in their teen years.

 Bilateral cleft lip repair

• Before (left): The baby has the skin needed to do the repair, but not in the typical place or shape.
• During (center): Surgery puts the skin, muscle and cartilage into the typical 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. Most children with cleft palate have fluid behind their eardrum. This can make it hard to hear.

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.

To keep the middle ear clear of fluid, we may recommend inserting small plastic tubes in the eardrum (tympanostomy tubes). We do this 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.

A surgeon closes the cleft and puts the muscles at the back of the roof of the mouth (soft palate) in the typical place across the cleft.

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

Usually, surgery takes 3 hours, and your child 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 repairing your child's cleft palate, as early as 9 months.

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

Most children with cleft palate will benefit from speech therapy to help them develop more typical speech patterns.

Some children with cleft palate have a condition called velopharyngeal dysfunction (VPD). They may benefit from further surgery after cleft palate repair. This is likely if your child has a type of VPD called velopharyngeal insufficiency (PDF). Your child’s surgeon and speech and language pathologist will work together to recommend what is best for your child. 

Sometimes for VPD 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.

Tooth problems are more common in children with clefts.

• 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 misshapen, 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 their adult teeth if their cleft affects the gum line (the hard palate) or the back of the roof of the mouth (soft palate).
• Most children with clefts have an evaluation by a craniofacial orthodontist on our team by age 6. We coordinate dental and orthodontic care 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 adjust their bite and align their teeth. For some children, this will include surgery on 1 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 need dental care and may need orthodontic treatment before bone graft surgery.

During an alveolar bone graft, the surgeon opens the gum tissue to show the gap in the bone. They take bone marrow from inside your child’s hip bone and put it into the gap. Next, the surgeon puts gum tissue back over the bone marrow and stitches it closed. They also stitch the cut in the hip.

After surgery, the bone marrow in the upper jaw will become hard, strong bone. This new bone provides an anchor for the adult teeth that will come into that area. The bone marrow that was taken from the hip will grow back within about 6 weeks.

We do this surgery when your child is 6 to 9 years old. Most often, surgery takes 2 hours. Your child may need to stay in the hospital overnight, but some children can 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 did not form in a typical way. A deviated septum is one example. Most often, we do surgery (septorhinoplasty) to improve breathing issues and symmetry during the late teen years.

Sometimes we consider doing a small surgery for the nose (rhinoplasty) during school age. Your child’s surgeon will work with you to decide how best to proceed.

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

Children with clefting are more likely to have 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 treat this.

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

It’s best to do jaw surgery when a child is completely done growing. For established Seattle Children’s patients, there’s no upper age limit for completing their cleft-related procedures with our surgeons.