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

Cleft lip and palate

Q: Why do we need research into clefts?

It also enables health professionals and scientists to determine which treatments and operations give the best results, and which groups of patients are most likely to benefit. Research paves the way for understanding more about why clefts happen, why they sometimes run in families and if anything could be done to reduce the likelihood of a cleft occurring in the future. Without research, our understanding of clefts and their treatment would not change. It is therefore vital to support research so that cleft care continues to improve for the next generation of patients

Q: What is Velopharyngeal Insufficiency?

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).

Q: What is a submucous cleft palate?

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.

Q: Can clefts have psychological effects?

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.

Q: What are the physical effects of cleft lip and palate?

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.

Q: How frequently do clefts happen?

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.

Q: How do clefts happen?

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.

Q: Are there any other conditions associated with clefts?

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.

Q: Why do clefts happen?

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.

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 craniofacial congenital disorder.
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, clefts can be very successfully treated through surgery, professional care and therapy and patients are usually treated by a multidisciplinary team:

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.

Latest

Javid's 10k Fundraising Run

My son Elvin was born with a cleft lip in 2024. But thanks to the NHS, we got world class care and the result was unrecognisable. Sometimes we remember the fact that he used to have a cleft and we miss his huge carefree cleft smile. But unfortunately not every child has access to the same professional support. It is Elvin's 2nd birthday this week, so I thought this would be the perfect opportunity to run 10k fundraising for CLEFT - to help other children across the world, bridging the gap.
LF1 Cleft Charity

We are raising money with the LF1 division of the Cleft Charity at Charles University, Prague, to support sustainable, long-term improvements in cleft care. Through fundraising and awareness initiatives at LF1, we aim to contribute to the main UK Cleft Charity’s mission of improving access to cleft treatment, multidisciplinary care, and support services for patients and families both in the UK and internationally.
London Marathon 2027

1.33 million people applied for the London Marathon 2027. For the first time ever CLEFT has a guaranteed place. We are looking for someone incredible to run the London Marathon for CLEFT. Could that person be you?
Sarah’s 10K for Cleft UK

I am raising money to provide long-term, sustainable ways to improve cleft care both in the UK and overseas.

Donate to CLEFT

You can make a one-off donation today or sign up to giving a regular monthly gift. All donations, small or large, will help us to improve the lives of those born with cleft lip and palate both now and in the future.
National Institute of Burns and Plastic Surgery

We are working with Bangladeshi specialists at the new National Institute of Burns and Plastic Surgery to create a sustainable centre to treat children with cleft lip and palate.
Our mission

CLEFT was established in 2007 with one aim, to help improve the lives of children born with cleft lip and palate, either by funding research into the likely causes of the condition or by helping support teams in lower and middle income countries.
Nawrin and the C-Arm

This important piece of equipment was supplied by CLEFT and is used to see moving images of the cleft palate. Nawrin is a 13 year old girl who was experiencing speech difficulties and needed the C-Arm to show the cleft team if further surgery was required.
About us

CLEFT was established in 2007 by cleft surgeon Brian Sommerlad - based at Great Ormond Street Hospital for Children, together with a former patient and a patient's grandmother.
The genetics of cleft lip and palate

Investigations into the genetics of cleft lip and palate to understand more about why cleft lip and palate occurs.
Brian Sommerlad, Consultant Plastic Surgeon and Chair of Trustees

For over 40 years, I have been involved in operating on babies, children and adults who have been born with cleft lip and/or palate.
Our research vision

At CLEFT, our vision is of a future where clefts are preventable. Until we get there, we want to improve the lives of those born with cleft lip and palate.
Trusts and Foundations

Today, 1-in-700 babies in the UK are born with a cleft lip and palate, the most common form of birth defect. The impact on a child’s life as they grow is profound. Typically, they will need at least four operations. They may also require ongoing tests, treatment or therapy. It will affect the way they look but also their speech, hearing and dental development. It can leave deep psychological scars.
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