The Ultimate Guide to SLCN

Cleft Lip and Palate

Cleft lip and palate are physical facial abnormalities which are present from birth. Cleft lip refers to a malformation of the upper lip, whereas cleft palate affects the roof of the mouth. A baby may be born with cleft lip without cleft palate, or vice versa, or both structures can be affected.

During normal antenatal development the two sides of the lips and roof of the mouth grow together and form a seam. Where this fails to happen, the baby can be left with a gap or ‘cleft’. For both the upper lip and the palate (the roof of the mouth) the opening can range from a small notch to a wide gap. The upper lip can be affected on either side of the midline with one separation (known as a unilateral cleft) or on both sides (a bilateral cleft).

The cause of cleft lip and palate is often a combination of genetic and environmental factors, and usually the birth of a baby with cleft lip and/or palate is a one-off event arising from a combination of unique circumstances. The exact cause is usually unclear. Most children with cleft lip and/or palate have no other associated medical conditions, but cleft palate is a feature of more than 400 different syndromes.

Top Tip

Remember that, depending on what stage the child is at with their treatment, they might not physically be able to make certain sounds. Talk with the child’s SaLT and avoid encouraging the child to produce a sound they cannot make.

Cleft lip and palate are sometimes able to be diagnosed during routine antenatal scans at 18-21 weeks gestation, however this depends on the position of the baby at the time of the scan among other factors. Cleft palate without cleft lip is rarely diagnosed during antenatal scans and is only discovered before birth in approximately 7% of cases.

As cleft lip and palate affect the structure of the mouth, this condition can impact on eating and drinking from birth and on the development of speech sound articulation. The structural abnormalities frequently also impact on hearing and children can be prone to middle ear infections and glue ear. Surgery is required to repair the cleft and the first surgery normally takes place when the baby is 9 months to 1 year old. Further surgeries can sometimes be required as the child grows up. The exact course of treatment varies between individuals but can include SaLT, monitoring of hearing, and orthodontic treatment. Most children who are born with cleft lip and/or palate grow up to lead completely normal lives.

Prevalence

Around 1 in every 700 babies globally are born with a cleft lip and/or palate annually. That’s around 1200 babies born with a cleft lip and/or palate in the UK every year. The extent of the cleft and the impact on the child varies. Of these babies, roughly 45% are born with cleft palate only, 24% have a cleft lip only, and 31% have both. It is more common for boys to only have a cleft lip, and more common for girls to only have a cleft palate. About 30% of children born with a cleft lip and/or palate have an associated medical syndrome.

What to look for

A cleft lip causes problems with feeding in infants and can lead to later speech sound articulation difficulties, although this is much less likely than in cases of cleft palate. A child with a cleft lip can be self-conscious about their appearance.

A cleft palate usually has a greater impact on the child’s speech development. It can also cause problems with dental development, eating and drinking, and it is often accompanied by hearing difficulties. Children with a cleft palate may experience frequent colds, sore throats, and middle ear infections as well as regular bouts of ‘glue ear’ – which is the most common type of hearing impairment in children with cleft palate. It is not uncommon for them to also experience problems with their tonsils and adenoids.

For most children the cleft will be identified at birth, but it is possible for a child to have a partial cleft palate, called a sub-mucous cleft, where the soft tissue has fused but the bone or cartilage underneath it has not. These children may not be identified as babies and can be at school before anyone becomes aware of this type of cleft. Children with a sub-mucous cleft will usually have speech sound difficulties, in particular with nasal escape (air coming out of the nose) when they are trying to produce the /f/, /v/, /s/ and /z/ sounds.

As the child’s language development will not be affected by a cleft lip and/or palate, it is important to include them in all classroom learning.

Difficulties

• Unclear speech
• Sound articulation errors
• Eating or drinking problems
• Recurring hearing difficulties, particularly ‘glue ear’, which may persist long-term
• Frequent middle ear infections
• Dental problems
• Lower attendance or missed lessons due to attending medical appointments
• Low self-esteem and frustration due to looking and sounding different to peers can affect class participation and lead to social interaction difficulties

Strategies

The difficulties faced by a child with cleft lip and/or palate can vary considerably between individuals. You should consult with parents and any professionals involved with the child to learn about their specific difficulties and find out about any specific strategies which will support that child.

Myth Busting

Do all children with cleft lip and/or palate have learning difficulties?

Children with cleft lip and/or palate are easily labelled as having a ‘disability’ because they may look or sound different, but this is usually not the case. Most children with a cleft lip and/or palate will usually go on to achieve the same things as their peers born without clefts. Only a minority of children born with cleft lip and/or palate will have a syndrome which may or may not also cause learning difficulties.

Are cleft lip and palate purely cosmetic?

Cleft lip and palate can cause considerable health difficulties if they are not treated. Difficulties with eating and drinking could cause malnutrition or chest infections, children are vulnerable to hearing impairments, clefts can cause breathing difficulties, and speech development can be disrupted. Surgery to repair the lip and/or palate is essential along with additional treatments and therapies which may be ongoing throughout childhood and into adolescence in some cases.

Will the visibility of a child’s cleft or scars determine how self-conscious they feel?

This isn’t always true. Some children who have had a more severe cleft will have learnt better coping strategies to deal with the responses of strangers. Children who have a less ‘obvious’ cleft may find it difficult to predict the reactions of strangers to their speech or appearance and may feel more anxious about it. Every child is different.

Role of SaLT

Children born with cleft lip and/or palate will be under the care of a multidisciplinary team of professionals from birth (or in the case of submucous cleft, as soon as this is discovered). He or she will be monitored by the cleft team until all repair work is complete and any difficulties associated with their cleft are felt to be resolved. Children will often spend long periods of time on review.

Infants with cleft lip and/or palate will likely first encounter SaLT for support with eating and drinking. Roughly half of all children with a cleft palate will need speech therapy at some point in their childhood. Many children will only need SaLT input when they are younger, but some children continue to need support from SaLT into their adolescence. There is considerable variation in the speech development of children with cleft lip and palate, and the severity of their cleft is not always a good indication of their level of difficulty. The amount of support the child will need and how it will best be delivered will depend on the needs of the individual.

The child may be known to more than one SaLT – a therapist from the cleft clinic and therapist from the local SaLT service. This is especially true if they do require active intervention. Because cleft lip and palate is a structural problem, speech therapy is only likely to be effective following surgery.

Further Information

The Cleft Lip and Palate Association – www.clapa.com

NHS UK – www.nhs.uk/conditions/cleft-lip-and-palate

Read more about Cleft Lip and Palate in The Link magazine, issue 12