Cleft means ‘split’ or ‘separation’. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary from child to child. A ‘cleft lip’ is a notch or gap in the upper lip – a ‘unilateral’ cleft lip means one gap, while a ‘bilateral’ cleft lip indicates two gaps which sometimes extend up into the nostrils. A ‘cleft palate’ is a hole or split in the roof of the mouth. The condition affects approximately 1 in every 700 babies born in the UK and is the most common congenital craniofacial anomaly.
Of the 1,000 babies born each year with a cleft, approximately 45% of these will have a cleft palate only, 23% will have a cleft lip only, 22% will have a unilateral cleft lip and palate, and the remaining 10% will have a bilateral cleft lip and palate.
HOW DOES IT HAPPEN?
A cleft occurs in the first trimester of pregnancy, and the cause is still unknown. Sometimes there is a clear genetic link where it is passed down through a family, other times it occurs as a one-off when a number of environmental and genetic factors work together in a way which could not have been predicted or prevented.
People with a cleft or families who have a child with a cleft are offered access to a geneticist to help them determine the likelihood of them passing on the condition to future children.
This affects approximately one in every 700 babies, and in the UK this means around three babies are born every day with a cleft.
WHAT ISSUES DOES IT CAUSE?
Problems associated with cleft lip and/or palate include feeding difficulties (a cleft palate often means a vacuum cannot be formed with the mouth which prevents suckling from a breast or bottle), hearing issues (such as glue ear), speech problems, facial growth, badly placed teeth and occasionally psychological issues to do with having a visible facial difference and/or different-sounding speech.
The type and severity of a cleft can vary. It can range from a small notch in the upper lip to a large portion of the mouth missing, and each child’s cleft will present its own unique issues.
A child with a cleft will usually have several surgeries in their first year of life to repair the cleft(s), and may have more procedures in the future including a bone graft at 8-10 years old (where bone is taken from their hip to fill the gap left in their gum by the cleft so that their adult teeth can grow properly) and, if required, cosmetic surgery on nose and/or lips. Treatment can also include speech therapy, hearing aids/grommets, and sessions with the cleft team psychologist.
It is commonly believed that a quick, single surgery is all that is needed to fix the problem, but in reality there is a 20-year treatment pathway for babies born with a cleft, and in some cases individuals will have issues that extend well into adulthood.
The term ‘harelip’ is outdated and offensive, as it stems from superstitious beliefs about the cause of clefting and compares a cleft lip to the lip of a hare. We use the term ‘cleft lip and/or palate’ (or ‘a cleft’ for short) to indicate everyone who was born with a cleft lip, a cleft palate, or a cleft lip and palate together. ‘Cleft palate’ is often incorrectly used by the public to mean ‘cleft lip’, or as a catch-all term for the condition as a whole, but ‘a cleft’ is much more accurate.