FAQs about clefts

A cleft is a congenital birth defect. 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 palate
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. The process of 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.
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.
We know that in the UK one in 700 babies are born with a cleft. 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.
There may also be other associated conditions. 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.  
Children born with a cleft may suffer from speech and hearing problems. 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.
In 21st century society, where looks seem to be paramount, ‘looking different’ can cause a severe sense of insecurity and inadequacy. 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.