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  1. About us
  2. About cleft lip and palate

Cleft lip and palate

In the womb, the upper lip develops from three parts and the palate develops into two halves which, in clefts, then fail to merge. There may be a cleft of the lip, the palate, or both. A baby born with cleft lip and palate usually requires two operations for the initial repair and then another operation at about 8 to 10 years of age to fill the gap in the alveolus (gum). Further surgery may be required to improve the appearance of the nose and the lip. As well as the obvious physical abnormality, there may be related problems with hearing or speech.

There is still so much that is unknown about clefts and why they occur. CLEFT is funding research into answering questions such as why do clefts occur and can we identify which genes have a role in clefts? For more information, look at some of the FAQs below to find out answers to questions such as What are the physical effects of cleft lip and palate? and Why do clefts happen?

The facts about cleft lip and palate

  • Every year, 1 in 700 babies in the UK is born with a cleft lip and/or palate.
  • Cleft is the most common birth defect.
  • Disruption of the lip and/or palate closing up during pregnancy will result in a cleft.
  • The causes of clefts are largely unknown but are likely to be a combination of genetic and environmental factors.
  • Approximately 10% of children born with a cleft also have an associated genetic syndrome.
  • A cleft palate, even after being surgically repaired, can affect how a child speaks and hears.
  • Children with clefts should get their hearing and speaking assessed early and often require ongoing treatment or therapy.
  • Surgical treatment to repair a cleft palate/ lip typically requires at least 4 operations before a child's 2nd birthday.
  • In the UK and at Great Ormond Street Hospital, clefts can be very successfully treated through surgery, professional care and therapy.

If you have any unanswered questions, please email them to [email protected] and we will do our best to get back to you within 48 hours.

  

What is a cleft?

A cleft is a congenital birth defect.

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There may be a cleft (split) just of the lip, just of the palate, or both. They can be one-sided (unilateral) or double sided (bilateral).

Unilateral cleft

Bilateral cleft

Published: 1st September, 2018

Updated: 9th October, 2019

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Why do clefts happen?

We do not know yet why clefts happen - in some case there is a genetic link.

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In many cases we do not yet know. In some case there is a genetic link. This is one of the major areas that we are researching. The gene involved in Van Der Woude syndrome (a cleft-related condition) has already been identified.

Published: 1st October, 2018

Updated: 9th October, 2019

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Are there any other conditions associated with clefts?

There may also be other associated conditions.

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For instance, in a condition known as Pierre Robin Sequence, the palate is associated with a small jaw, making breathing and feeding difficult. In a condition known as Stickler’s syndrome is a subgroup of Pierre Robin Sequence and, there may be associated eye abnormalities, which can lead to retinal detachment and even blindness if not treated. A condition known as 22q11 deletion syndrome (or velocardiofacial syndrome) is frequently associated with a cleft palate or a poorly functioning palate which may not actually be cleft. This has been a major area of research for CLEFT. Please click here to find out more information about 22q11 deletion syndrome. In another condition, van der Woude syndrome (where a cleft may be associated with pits in the lower lip), we now know the gene involved.  

Published: 1st November, 2018

Updated: 22nd April, 2020

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How do clefts happen?

In the womb, the upper lip develops from three parts and the palate develops in two halves, which then join in the middle. Clefts happen when they fail to join normally.

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The process of the joining of the gum and lip begins behind the gum at about 6 weeks after conception. If it does not happen, there is a complete cleft of the lip and gum. Sometimes, if the process of joining begins and is not completed, the gum may not be affected. The two halves of the palate join at about 8 weeks and this process, too, may be partial or complete so that clefts may just involve the soft palate or the hard and soft palate.

Published: 1st December, 2018

Updated: 3rd March, 2020

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How frequently do clefts happen?

We know that in the UK one in 700 babies are born with a cleft.

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The figure is higher in Asia and particularly so in people from the Far East. It is estimated that 250,000 babies throughout the world are born each year with a cleft.

Published: 1st January, 2019

Updated: 9th October, 2019

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What are the physical effects of cleft lip and palate?

Children born with a cleft may suffer from speech and hearing problems.

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Patients may need many procedures to achieve a satisfactory result. These will involve stays in hospitals and may be painful and traumatic – not just for the patients but also for those who care for them. However, other patients have good results after a minimum number of operations. This may be because of the quality of surgery but there are other factors – some of which we don’t yet understand. In the developing world, where cleft patients are frequently not operated on until later in life (if at all), they may be malnourished, unable to talk well or hear properly and will often be social outcasts.

Published: 1st February, 2019

Updated: 9th October, 2019

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Can clefts have psychological effects?

In 21st century society, where looks seem to be paramount, ‘looking different’ can cause a severe sense of insecurity and inadequacy.

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Children with clefts are often bullied which can lead to a lack of confidence and falling behind at school. If the child or adult has a speech impediment caused by their cleft this can lead to difficulty with communication and associated feelings of inadequacy and isolation through shyness or inhibition. However, with speech therapy and supportive parents most children with clefts in the UK enjoy a happy, secure childhood.

Published: 1st March, 2019

Updated: 9th October, 2019

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What is a submucous cleft palate?

A submucous cleft palate is a variety of cleft palate where the palate may look relatively normal but the muscles that lift the palate for speech are abnormal.

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The classical signs of a submucous cleft are that the uvula (the dangly bit at the back of the soft palate) is split, there is a bony gap at the back of the hard palate and the midline of the soft palate may look very thin - translucent. However, not all have these classical signs.

 Submucous clefts may not be recognised at birth. If not they may be diagnosed at a later age because:

  • There may be feeding difficulties in infancy
  • Speech development may be delayed and speech nasal
  • Hearing may be affected and the diagnosis made by an ENT surgeon
  • Sometimes after adenoidectomy which may be done to improve hearing. The adenoids on the back of the throat camouflage the fact that the palate is not functioning normally and the speech becomes nasal when they are removed.
  • Sometimes they are discovered as an incidental finding. Not all submucous palates cause problems with speech or feeding.

The diagnosis can be confirmed by investigations such as lateral videofluoroscopy and nasendoscopy. If surgery is indicated, this usually involves an operation to correct the muscles of the soft palate. Sometimes a second operation is needed if the first is not completely successful.

 

Published: 22nd April, 2020

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What is Velopharyngeal Insufficiency?

In the normal palate, the muscles of the soft palate (velum) are responsible for closing the velo-pharyngeal opening (the opening between the palate and the pharynx – the back wall of the throat).

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This is essential for normal speech and to prevent regurgitation of food and fluids through the nose.

We know that in the UK, the velopharyngeal opening will not close properly in 25% of patients who have a repaired palate – this is called velopharyngeal insufficiency (VPI).

Published: 27th August, 2020

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