What is a cleft?

In early pregnancy, different parts of a baby's face develop separately and then join together. If some parts do not join fully, the baby is born with a cleft.  Cleft is another word for gap, so a cleft lip or palate just means a gap in the lip or palate.  This happens very early on in pregnancy and we don't know why.

Because the gap didn't close during pregnancy, we need to close it after birth.  If you had a cleft lip, you would have had an operation to close the gap when you were a few months old.  The operation to close the palate also happens when you are a baby.

Sometimes, people need some further operations to help with their speech or because of how their face changes as they get older.  If you would like to know more about the operations you have had, you can ask your parents/carers or arrange an appointment with the cleft team to talk about it.

If you would like to find out if any more operations are possible, you can come and see the team to talk about it.  Having an appointment doesn't commit you to a decision one way or the other.

About 1,200 babies are born with a cleft of the lip and/or the palate each year.  You may want to know more about the genetics of this.  Your cleft team can give you more information or refer you for an appointment with a geneticist if you wish.

In a few cases, the cleft is part of a specific genetic condition.  There are some conditions that are associated with a cleft lip and others associated with a cleft palate. This may mean you have had some additional treatment or support. Your cleft team can give you more information if you have an associated condition.  There are lots of conditions associated with a cleft, but most of these are very rare. If you are unsure about your own diagnosis, please do ask your parents/carers or the team for more information.  You can also find information on our website here or go onto the CLAPA website here. 

In most cases, the cleft happens without any associated condition, and this is sometimes called an isolated cleft lip or palate.

What about genetics and recurrence?

If you are starting to think about the future and having children of your own you might be wondering about the chance of a child having a cleft. People who are born with a cleft have a slightly increased risk of having a baby with a cleft of about 3-4%. These risks apply where there is no suggestion of an underlying genetic condition which has caused the cleft and where no-one else in the family had a cleft. If any family members have a cleft, this risk is likely to be higher and you may like to seek specific advice from a geneticist or genetic counsellor. If there are several family members with clefts this may significantly increase the risk, but more distant relatives with clefts may only change the risk marginally.

Sometimes a person may have a cleft palate without any involvement of the lip (isolated cleft palate). When this happens to a child and there is no family history or additional medical problems, the parents will have a small increased risk of having another affected child, in the region of 2%. This risk is slightly less than when a cleft lip and palate occur together. Sometimes there are several relatives with a cleft palate. In these families, the risk of the cleft palate recurring again in other children is considerably higher and these families should be referred for genetic counselling, as the cleft may be part of an underlying condition caused by a specific gene.

The causes of cleft palate alone and cleft lip and palate are thought to differ. Any couple who have an increased risk of having a baby with a cleft palate do not have a significantly raised risk of having a baby with a CLP and vice versa.