Cleft Lip and Palate in Children

What are cleft lip and cleft palate in children?

Cleft lip and palate are openings or splits in the upper lip or roof of the mouth (palate). A child can be born with a cleft lip, cleft palate, or both. Cleft lip and palate may be the only birth defects, or they may happen with other defects.

A cleft lip may be as mild as a notch of the lip. Or it may be as severe as a large opening from the lip to the nose. 

A cleft palate may leave an opening that goes into the nasal cavity. Cleft palate is not as noticeable as cleft lip because it is inside the mouth. The cleft may:

• Affect one or both sides of the palate

• Go from the front of the mouth or hard palate to the throat or soft palate

• Include the lip

What causes cleft lip and cleft palate in a child?

Cleft lip and cleft palate happen when a baby develops in the mother's uterus. Researchers don't know the exact cause of cleft lip and palate. It can be caused by genes passed on from parents, as well as environmental factors. Environmental factors include taking certain medicines during pregnancy, smoking or drinking alcohol during pregnancy, infections, and getting too little vitamin B and folic acid during pregnancy. Parents who have cleft lip, cleft palate, or both, or who have other kids with the problem are at an increased risk of having babies with the defect.

What are the symptoms of cleft lip and cleft palate in a child?

The symptoms of these problems can be seen during the first exam by your baby's healthcare provider. How much the lip or palate differs from normal can vary. The symptoms can include:

• Lip doesn't close fully

• Roof of the mouth doesn't close fully

• Neither the lip nor the roof of the mouth closes fully

How are cleft lip and cleft palate diagnosed in a child?

A cleft lip and cleft palate can be diagnosed during pregnancy during a routine ultrasound exam. Or they may be seen during the first exam by your baby’s healthcare provider.

How are cleft lip and cleft palate treated in a child?

Both cleft lip and cleft palate can be fixed with surgery.

• Cleft lip. The first surgery for cleft lip is often done before a baby is 1 year old, but as early as possible.

• Cleft palate. The first surgery for cleft palate is often done in the first 18 months after birth, but again as early as possible. Some children may need more than one surgery.

What are possible complications of cleft lip and cleft palate in a child?

Beyond the appearance of a cleft lip, other possible complications include:

• Feeding trouble. Feeding trouble happens more with cleft palate defects. Your baby may not be able to suck correctly because the roof of the mouth is not formed completely. Most babies with cleft palate aren't able to breastfeed. But they can be fed breastmilk with special nipples and bottles.

• Ear infections and hearing loss. Ear infections are often caused by problems with the tubes that connect the middle ear to the throat (eustachian tubes). Infections that come back again and again can then lead to hearing loss.

• Speech and language delay. Muscles involved with speech may not work well. This can lead to a delay in speech or odd speech. Talk with your child’s healthcare provider about seeing a speech therapist.

• Dental problems. The child may have problems with their teeth. Your child may need to see an orthodontist. This is a dentist with special training to treat teeth that are out of line and problems with the jaw.

What can I do to prevent cleft lip and cleft palate in my child?

Cleft lip and cleft palate can’t always be prevented. But there are things you can do to reduce the risk. They include:

• Get a pre-pregnancy exam to make sure you are healthy before you get pregnant.

• Get regular and complete prenatal care during pregnancy.

• Take folic acid if you are trying to get pregnant.

• Take daily prenatal vitamins that include folic acid during pregnancy.

• Don’t smoke. Ask your healthcare provider for help quitting if needed.

• Don’t drink alcohol during pregnancy.

Think about getting genetic counseling if other members of your family have had cleft lip and palate.

How can I manage cleft lip and cleft palate in my child?

Your baby’s healthcare provider will help you figure out how to best care for your baby. 

The main concern for your baby is good nutrition. Sucking is difficult because of the opening in the poorly formed roof of the mouth.

A baby with a cleft lip, a cleft palate, or both will have specific healthcare needs. What works for one child may not work for another.

Cleft lip

A baby with just a cleft lip often doesn't have trouble feeding. To help with feeding, try the following:

• Breastfeed if you can. It will take extra time and patience. You may also pump your breastmilk and feed it to your baby in a bottle.

• Hold your baby in an upright position to help them swallow and to keep milk from going into the nose.

• Give feedings often, but keep them small. This can help your baby get more calories and gain weight.

• Try different types of bottles and nipples to find ones that work for your child. Many types are available for babies with a cleft lip. Talk with your child’s healthcare provider about which type is best for your child.

Cleft palate

A baby with a cleft palate will need extra support with feeding. Talk with your child's healthcare provider to find out the best way to feed your baby.

• Give breastmilk if you can. Regardless of how severe the cleft is, your baby will need extra support with feeding. Most babies with cleft palate can't breastfeed. But some babies with a small or narrow cleft of only the soft palate may be able to breastfeed. Babies with more severe clefts can't breastfeed. A lactation specialist can teach you how to pump your breastmilk to give to your baby by bottle. Many types of special bottles and nipples are available for a baby with cleft palate. Your child's healthcare provider or a cleft nurse feeding specialist can teach you how to bottle-feed your child.

To help with feeding, try the following:

• Hold your baby in an upright position to help them swallow and to keep milk from going into the nose.

• Give feedings often, but keep them small. This can help your baby get more calories and gain weight.

• Talk with your child's healthcare provider or a cleft nurse feeding specialist about the best and safest positions to offer your child a breast or bottle.

The team approach is used for managing and fixing cleft lip and palate. Many healthcare providers may be involved in your baby’s care. They may include:

• Plastic surgeon

• Face and head (craniofacial) surgeon

• Ear, nose, and throat healthcare provider (ENT or otolaryngologist)

• Orthodontist

• Pediatric dentist

• Speech and language therapist

• Genetic counselor

The healthcare team may also refer your child to other specialists unique to your child's condition.

Key points about cleft lip and cleft palate in children

• Cleft lip is a split in the lip, and cleft palate is a split in the roof of the mouth.

• Cleft lip and cleft palate happen when there is a problem as the baby develops in the mother's uterus.

• Genes and the environment are involved, but the cause is not completely understood.

• Surgery is the treatment for both cleft lip and palate.

• The main concern for a baby with cleft palate is good nutrition. Talk with your child's healthcare provider or a cleft nurse feeding specialist.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s healthcare provider after office hours. This is important if your child becomes ill and you have questions or need advice.