Cleft lip and / or palate

Overview

Incidence and Delayed Detection

• Diagnosis 24 hours after birth is classified as delayed.
• Annually, 10-20% of babies receive a delayed diagnosis of a cleft palate.
• 18% of cleft palates are diagnosed between 1 week and 6 months of age.
• The impact of a delayed detection for families can be devastating.

Cleft Registry and Audit Network Database (2023) “Annual Report.”

Always visualise the palate. Best practice is to use a tongue depressor and torch, as per RCPCH guidelines: Palate examination: Identification of cleft palate in the newborn - best practice guide | RCPCH

Prevalence and diagnosis

Around one in 700 babies are born with a cleft lip and/or palate worldwide. In the UK, the overall estimate for the prevalence of cleft lip and/or palate is 15.1 per 10,000 live births, as recorded by the Cleft Registry and Audit Network (CRANE) between 2009 and 2018. In 2022, 896 children were registered to the CRANE database.

 A cleft lip and/or palate forms very early in the pregnancy. A cleft lip can be unilateral or bilateral and be as small as a notch, be incomplete or complete and extend through the alveolus and into the nose. A cleft palate can affect the soft palate, hard palate or both and can be overt or submucous (under the skin).

A cleft involving the lip is usually identified during a routine ultrasound scan at around 20 weeks gestation. Clefts affecting only the palate can be difficult to detect by ultrasound and are usually diagnosed immediately after birth or during the newborn physical examination, performed within 72 hours of birth. However, only 33% of submucous cleft palates are identified before or within 24 hours after birth.

When the cleft surgeon first meets a person born with a cleft, they will determine the specific cleft type. 

Function of the palate

The soft palate is made up of muscles which move and help with eating and drinking, speech and hearing:

Eating and Drinking:

Babies with only a cleft lip may not have difficulties feeding, but some may find making a seal around the nipple or teat difficult, particularly when the alveolus is also affected by the cleft. Specialist equipment may be needed but it may be possible for the baby to feed from a standard bottle and teat or directly breastfeed.

Babies with a cleft palate usually have difficulty getting the negative pressure needed for suction to occur because the cleft causes an air leak. Therefore they usually require some assistance to feed effectively, via specialist bottles. If parents wish to breastfeed, we are usually able to provide a breast pump on loan so that parents can express milk and feed via the specialist bottles.

Speech:

Most children born with a cleft palate develop good speech, but some children require speech therapy and some require further surgery specifically to address their speech difficulties.

Hearing:

Children with a cleft palate are at greater risk of having a hearing loss, as the muscles of the palate also ventilate the Eustachian tube. Children born with a cleft palate will need regular hearing tests.

South West Cleft Service

The South West Cleft Service is a lifelong service which provides free comprehensive cleft care to patients born with a cleft lip and/or palate in the BNSSG area as well as Cornwall, Devon, some of Wiltshire, Somerset, BANES and Gloucestershire.

We provide services around any aspect of health and wellbeing related to a cleft, including surgical repair, feeding support, speech and language therapy, psychology support, dental and orthodontic treatment and aesthetic surgery (including lip revisions, rhinoplasties, orthognathic surgery). We routinely complete speech and language checks at age 2 and 3 and carry out audits of all aspects of cleft care at ages 5, 10, 15 and 20. Though treatment is often complete at age 20, treatment can continue up to any age when required.

Who to refer

• Any child or adult where a potential cleft lip and/or palate has been visually identified and/or any child or adult with some or all of the feeding and/or speech difficulties described below.
• Any child or adult with a previously diagnosed cleft lip and/or palate who has moved into the geographical area of the South West Cleft Service.
• Please note that any parent of a child or adult already known to the South West Cleft Service can request to speak to a member of the team by calling 0117 342 1177. If required, an appointment can be made at the earliest opportunity.

Potential referral reasons:

Feeding:

• Baby not latching onto the breast
• Nasal regurgitation of milk during feed (not to be confused with being sick through the nose)
• Clicking sound during feeds
• Faltering growth
• Slow to feed
• Tiring during feeds

Speech:

• Preference for nasal sounds (/m/, /n/, /ng/)
• Limited oral pressure consonants (e.g. /p/, /b/, /t/, /d/, /s/, /f/, /sh/)
• Hypernasal speech (too much air resonating in the nose)
• Audible nasal escape of air when talking (this can sound airy or a snorting sound)

Submucous Cleft Palate:

• Bifid (split) uvula
• Translucent zone down middle of palate (blue-ish shadow where muscles have not met under the skin)
• Notch at junction of soft palate and hard palate (felt with a gloved finger)
• Possible speech difficulties (as above)
• Possible feeding difficulties (as above)

Referral

If concerns regarding a possible cleft lip and/or palate are identified at antenatal scan or birth, clinicians should notify the South West Cleft Service by calling 0117 342 1177 as soon as possible, so that a clinical nurse specialist can contact the family within 24 hours.

If concerns regarding a possible cleft lip and/or palate or any other palate related concerns are identified at any other point, please complete South West Cleft Service Clinic Referral Form and email to: swcleftservice@uhbw.nhs.uk 

If you have any questions, please call 0117 342 1177.

Resources

• ‘Could it be a cleft palate?’ poster 

Patient Information/ Leaflets

• South West Cleft Service leaflets: https://www.uhbristol.nhs.uk/patients-and-visitors/your-hospitals/bristol-royal-hospital-for-children/what-we-do/the-south-west-cleft-service/information-and-leaflets/
• South West Cleft Service useful links: https://www.uhbristol.nhs.uk/patients-and-visitors/your-hospitals/bristol-royal-hospital-for-children/what-we-do/the-south-west-cleft-service/useful-links/

Evidence: 

• Cleft Registry and Audit Network (CRANE) Annual Reports: https://www.crane-database.org.uk/

Links to websites:

• South West Cleft Service: https://www.uhbristol.nhs.uk/cleft
• Cleft Lip and Palate Association (CLAPA) https://www.clapa.com/

References

(1) CRANE-2023-Annual-Report_22Jan24_V1.1.pdf (crane-database.org.uk)

(2) Palate examination: Identification of cleft palate in the newborn - best practice guide | RCPCH

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