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What you need to know about clefts

What causes a cleft lip and / or palate?
Diagnosis of a cleft lip and / or palate
Symptoms of a cleft lip and / or palate
Treatment for a cleft lip and / or palate
Could this happen again in a future pregnancy?

What causes a cleft lip and / or palate?

Clefts occur early in pregnancy when the head and neck are forming. The two halves do not join together as they should, which leaves a gap in the palate (roof of the mouth).

A combination of genetic and environmental factors may cause clefts, but more research is needed.

Most cases of cleft lip and/or palate occur randomly. However, some children have parents or other relatives who also had a cleft.

Sometimes clefts can also develop as part of a genetic syndrome. The doctors will examine your child closely to check for any other symptoms.

If a genetic syndrome is suspected, your child will be referred to the regional genetics service for further investigations and counselling.

Approximately 1 in 700 babies are born with a cleft in the UK each year.

Diagnosis of a cleft lip and / or palate

A cleft lip can be diagnosed during pregnancy at the 20 week scan.

A cleft palate will usually be diagnosed within 24 hours of birth.

Symptoms of a cleft lip and / or palate

Most children born with a cleft have no other medical conditions, so your child should grow and develop normally. The cleft may sometimes cause difficulties with feeding, speech, hearing, appearance or the position of teeth.

A cleft palate means your baby will find it difficult to form a seal around your breast or a bottle. As a result, your baby will have difficulty sucking. This can have an immediate effect on feeding.

There are soft bottles available to assist with this problem. Mothers can express their breast milk and feed the baby using this bottle.

Children with a cleft palate also seem to be at increased risk of ‘glue ear’. This occurs when a sticky fluid (glue) builds up inside the ear.

Glue ear can affect your child’s hearing because parts of the middle ear cannot move freely. However, the level of hearing loss is mild to moderate, rather than severe or profound.

After palate repair, your child may continue to have a few issues with their speech. Velopharyngeal insufficiency (VPI) is the term used when the palate does not close the nose off from the back of the mouth completely when speaking.

VPI results in a ‘nasal’ voice. It makes consonant sounds more difficult and can contribute to a delay in speech and language development.

However, with treatment and support from the cleft team, the majority of children have very good outcomes.

Treatment for a cleft lip and / or palate

Cleft palate repair surgery usually happens when your child is between nine months and a year old.

Further surgery may be needed at various stages of childhood and adolescence. This may include pharyngoplasty or cleft palate re-repair, which improves the function of the soft palate at the back of the mouth.

In addition to surgery, your child will have support from other professionals to support their hearing and speech.

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Could this happen again in a future pregnancy?

Most clefts occur randomly, so the risk of it happening again in a future pregnancy is believed to be very low – around 1 in 50 where the cleft is not related to a family history.

Where there is a family history of clefts, the risk of it happening again increases to around 1 in 20.