Back Print

Cleft Lip and/or Palate

Background

A cleft is a split in the upper lip or palate (roof of the mouth). A cleft lip and/or palate occur when there is a partial or total failure of the lip and/or palate to fuse during the early stages of pregnancy. Clefts may affect the lip (on one or both sides), the palate, or both. Cleft lip and/or palate affects around 1 in 700 hundred babies born in the UK.

Credits

Medical text written November 1991 by Contact a Family. Approved November 1991 by Professor M Patton, Professor of Medical Genetics, St Georges Hospital Medical School, London, UK and Dr J E Wraith, Consultant Paediatrician, Royal Manchester Children's Hospital, Manchester, UK. Last updated December 2011 by Mr B Sommerlad, Consultant Plastic Surgeon, Cleft Lip and Palate Unit, Great Ormond Street Hospital, London, UK.

What are the symptoms?

There are two types of cleft lip:

  • unilateral cleft - where the cleft occurs on one side of the lip
  • bilateral cleft - where the cleft occurs on both sides of the lip.

The appearance of the cleft lip is variable among babies. It can be an incomplete cleft (a small notch in the lip) or a wide gap that runs all the way up to the nostril (complete cleft lip). The appearance of a cleft palate can be anything from an opening at the back of the soft palate towards the throat to an almost complete separation of the roof of the mouth.

What are the causes?

A cleft lip and/or palate can occur in isolation or be part of a specific syndrome, such as Pierre Robin syndrome. The risk of a cleft lip and/or palate may be increased by:

  • certain medications being prescribed during pregnancy, such as phenytoin (a drug used to control seizures in epilepsy)
  • drinking a large amount of alcohol during pregnancy
  • maternal smoking
  • maternal infection during pregnancy.

In a large majority of cases, the cause of a cleft lip and/or palate is not known.

How is it treated?

A cleft lip is usually repaired surgically on the NHS at about three months and cleft palate at 6 to 12 months of age. Infants with clefts of the lip and/or palate should be referred to a specialist cleft clinic. The team at these clinics will be made up of various specialists, including:

  • a specialist cleft nurse
  • a cleft surgeon
  • an orthodontist
  • a paediatric (children's) dentist
  • a speech and language therapist
  • a psychologist
  • an audiologist and ear, nose and throat (ENT) surgeon a paediatrician.

Once surgical repair of a cleft lip and/or palate has occurred follow-up assessment and treatment will occur. This includes speech and language assessment and orthodontic assessment.

Inheritance patterns and prenatal diagnosis

Inheritance patterns
Cleft lip and/or palate can sometimes run in families, suggesting a genetic predisposition. The risk of recurrence increases with the number of affected people in a family. Occasionally the condition is part of another inheritable syndrome. Genetic counselling should be offered.

Prenatal diagnosis
Clefts of the lip are often found on the 18 to 20-week ultrasound during pregnancy. Referral should then be made to a cleft team for discussion.

Is there support?

Cleft Lip & Palate Association (CLAPA)

Tel: 020 7833 4883
Email: info@clapa.com
www.clapa.com

The Association is a Registered Charity in England and Wales No. 1108160. It provides information and support to those affected by cleft lip and palate and Pierre Robin Syndrome. The Association offers local parent-to-parent support through a nation-wide network, runs a specialist feeding service, and supports children and adolescents at school and in social settings. 

Group details last updated October 2014.

Talk to other families about your child's condition

Our online community

Visit our online advice and support or read all about diagnosis.


You can also call us if you need information or advice on any aspect of caring for a disabled child. Monday to Friday, 9.30am to 5pm.


0808 808 3555 or helpline@contact.org.uk