Cleft palate and cleft lip

A cleft lip or cleft palate (or both) is a birth condition in which a baby’s mouth parts do not join up during early fetal development. The two halves of the palate (the roof of the mouth) or the lip do not fuse properly, leaving an open space, or “cleft”. This can occur on one side of the face only (unilateral) or on both sides (bilateral).

About one in every 600 to 800 babies is affected by cleft lip or cleft palate. The cause is unknown, although it is thought that genetic factors play a role in a small number of cases. Surgery can repair a cleft lip or cleft palate, and aims to support the child’s appearance and speech development.

How a cleft lip or palate develops#

Late in the first month of pregnancy, the baby’s mouth develops in two halves that grow closer together. Around the sixth to eighth week of pregnancy, the two halves of the hard palate fuse to form the roof of the mouth. The fusing seam then travels forward and backward to seal the lips and the uvula (the teardrop-shaped tissue that hangs at the back of the throat). By the tenth week of pregnancy, the mouth is fully formed and the nose has developed its familiar structure.

In a child with a cleft lip or cleft palate (or both), these two halves do not fuse properly. Other areas that may not join up include the soft palate, at the back of the roof of the mouth, and the nostrils.

Cleft conditions vary in severity and extent#

Types include:

• cleft lip only
• cleft palate only
• cleft lip and palate
• microform cleft (a notch or scar)
• unilateral cleft (one side) or bilateral cleft (both sides)
• cleft involving the soft and hard palate
• submucous cleft palate (under the mucous membrane of the mouth)

Diagnosis of cleft lip and palate#

A cleft lip is often detected on ultrasound at around 20 weeks of pregnancy, although a cleft palate can be more difficult to detect at this time. A prenatal diagnosis provides an opportunity for parent education and counselling support. A thorough examination of a baby’s face and mouth at birth is needed to diagnose the type and severity of the cleft.

Causes of cleft lip and cleft palate#

The causes of cleft lip and cleft palate are unknown, although hereditary (genetic) factors sometimes play a small role. A cleft is not caused by anything the parents did or did not do during the pregnancy. Even the healthiest, well-planned pregnancies can result in a cleft, and this is no one’s fault.

Around one in three babies born with a cleft may have a relative with the same or a similar condition, or with an associated chromosomal condition. A parent who was born with a cleft has a small chance of passing on the condition to their child. But around two thirds of cases have no known family history or cause.

Genetic counselling and testing#

A cleft lip or cleft palate may exist on its own, or it may be part of a “syndrome”, which is when several different symptoms occur together. One of these symptoms can be a cleft lip, a cleft palate, or both. There are over 400 conditions and syndromes for which a cleft can be a symptom.

To find out whether your child’s cleft is linked to a genetic condition, or if you know a genetic condition runs in your family, it can be helpful to speak to a genetic counsellor. Genetic counsellors are health professionals qualified in both counselling and genetics. As well as providing emotional support, they can help you understand a condition and its cause, how it is inherited (if it is), and what a diagnosis means for your child’s health and development. They aim to provide information and support that is sensitive to your family circumstances, culture and beliefs.

If a genetic condition runs in your family, a genetic counsellor can explain what genetic testing options are available to you and other family members. You may choose to visit a genetic counsellor if you are planning a family, to learn your risk of passing a condition on, or to arrange prenatal tests. Genetics services can provide consultation, counselling, testing and diagnostic services for children, adults, families and prospective parents, and can connect you with support groups and other families affected by genetic conditions associated with cleft lip or cleft palate.

Feeding a baby with a cleft lip or cleft palate#

Babies born with a cleft lip alone are usually able to feed well. But babies with a cleft palate often have difficulty creating enough suction to draw milk from the breast or a regular bottle, because air leaks from the nose to the mouth. They tend to need bottles and teats specially designed for babies with a cleft palate.

If your baby cannot feed directly from the breast, you can still feed your baby your expressed breastmilk. Talk to a midwife, lactation consultant, child health nurse, paediatrician or paediatric speech therapist with experience in cleft lip and cleft palate about how to do this.

Breastmilk protects your baby against infections and other common health problems. It is beneficial for all babies, but particularly so for babies with a cleft palate, who can be more susceptible to ear infections than other babies. Protection from infection is very important for babies who may need surgery.

Breastfeeding with a cleft lip only#

Babies born with a cleft lip alone usually breastfeed (or bottle-feed) well. Some babies breastfeed better with the cleft facing upwards. The breast tissue usually fills the gap caused by the cleft and allows efficient feeding. Your hospital health care team can refer you to a lactation consultant and a paediatric speech pathologist for support with positioning and feeding efficiency.

Feeding with a cleft palate#

Babies with a cleft palate usually have difficulty creating enough suction to draw milk from the breast or bottle, because air leaks from their nose to their mouth and they may not be able to compress the breast or teat well enough. The degree of difficulty depends on the location and severity of the cleft. These babies usually need special bottles and teats to feed well.

It is important to get help to find what works best for you and your baby. Help is available through lactation consultants, hospital midwives and child health nurses, who can advise on positioning and feeding efficiency. Your hospital team can also refer you to a paediatrician and paediatric speech pathologist for further support.

Tips for bottle-feeding#

• Before feeding, practise squeezing the bottle or compressing the teat to become familiar with the rate of flow and the pressure required.
• Squeeze the bottle rhythmically only when your baby sucks (for example, every two, three or five sucks). With some specialised feeders, you squeeze the teat rather than the bottle.
• A squeeze every three to four sucks is usually enough, but all babies are different, so you may need to experiment with the rate of squeezing.
• Hold your baby in a semi-upright position.
• Have several breaks for burping.
• Keep each feed to about 20 to 30 minutes. Longer feeds mean your baby uses too much energy, which can make weight gain difficult.

Tube feeding#

In most cases a baby with a cleft lip and palate can be fully bottle-fed. In some rare cases, if the baby cannot feed successfully using a bottle, they may need a short-term naso-gastric tube, which passes from the nose into the stomach. If tube feeding is necessary, your hospital team will help you, and can help arrange ongoing support if tube feeding needs to continue after you leave hospital.

Management of cleft lip and palate#

Babies born with a cleft lip or cleft palate (or both) need care from a multidisciplinary team, sometimes called a cleft clinic or cleft team. Your baby will be referred to a cleft team at birth or soon after, or before birth if the cleft was detected during pregnancy. A cleft coordinator helps guide you through the process. Referrals may come from your doctor, ultrasound specialist, obstetrician or maternity team.

A cleft team may include:

• audiologist
• clinical nurse consultant
• dental specialist
• ear, nose and throat surgeon
• orthodontist
• paediatrician
• paediatric speech pathologist
• plastic surgeon

Treatment for cleft lip#

A cleft lip can be treated with lip repair surgery, usually when the baby is around three to six months of age. An altered nose is often associated with a cleft lip, so the surgery reconstructs the shape of both the lip and the nose, joining the tissues that were not joined before birth. Your baby will be placed under general anaesthetic, so they will be asleep during the surgery.

Treatment for cleft palate#

Cleft palates are usually repaired before the baby is ready to speak, generally between nine months and one year. During the operation, nearby mouth tissue is used to close over the cleft. Some children need further operations, such as a pharyngoplasty, to help seal the mouth from the nasal cavity, and some will have speech difficulties after surgery that speech pathology can help to overcome.

Children born with a cleft palate are more likely to develop recurring ear infections, such as “glue ear”, which need ongoing attention from an ear, nose and throat surgeon. Depending on the location and severity of the cleft, other treatments might include:

• follow-up surgery on the hard palate at a later stage
• jawbone realignment before surgery, using elastic braces
• bone grafts for the upper jaw at around 10 years of age
• ongoing dental and orthodontic care
• rhinoplasty surgery to improve breathing and nasal symmetry
• subsequent revision surgery as your child matures

Your child may need some or all of these treatments. Location and severity are only part of the picture, and a severe cleft does not always need complex treatment. Treatment needs and success depend on a range of factors.

Support for parents#

Having a child born with a cleft palate or cleft lip can be an anxious time, particularly in the first few days when feeding is difficult and you have unanswered questions. Support is available.

Various organisations offer information and advice, and support groups can put you in touch with other parents and families. Many volunteers are parents, or adults who themselves were born with a cleft, who understand what you are going through. Support groups often offer regular updates, family events, help with ordering feeding equipment, and youth groups where young people can meet and share experiences. Some services also help families to meet treatment costs for specialised cleft care.

It is important to remember that clefts can be repaired. Children who are born with a cleft palate or cleft lip (or both) go on to lead normal, happy lives.

Key points#

• The cause is unknown, although it is thought that genetic factors play a role in a small number of cases.
• A cleft lip or cleft palate (or both) is not caused by anything the parents did or did not do during the pregnancy.
• Around two thirds of cases have no known family history or cause.
• A cleft can be part of a syndrome, which is when several different symptoms happen together.
• One of these symptoms can be a cleft lip, a cleft palate, or both.

Where to get help#