This section is based on the experiences of 24 families who have a child born with a cleft lip and/or palate and 15 adults who were born with the condition.

Researchers talked to people about their experiences of diagnosis, birth, treatment, public awareness, and social interaction with respect to cleft lip and palate. They also gave advice for other people affected by cleft and made suggestions for possible changes within the cleft service in the UK.

We hope you find the information helpful and reassuring.

What is cleft lip/and or palate?

About 1 in 700 babies in the U.K. are born with a cleft lip, a cleft palate or a cleft lip and palate. A cleft is a gap in the lip or the palate (roof of the mouth) that happens because separate parts of the face do not join together completely during the baby’s development in the womb.

In most cases a cleft lip is diagnosed at the routine 20 week antenatal scan but it is not possible to detect a cleft palate at this this time. A cleft palate will be diagnosed after the baby is born when a doctor or other health care professional looks into the baby’s mouth with a torch.

With a cleft lip, if the lip has a gap only on one side it is called a ‘unilateral’ cleft lip, and if both sides of the lip have gaps it is called a ‘bilateral’ cleft lip. In the same way, a palate with one split is a unilateral cleft palate whereas two splits are described as a bilateral cleft palate.

In the UK, a baby born with a cleft lip and/or palate is monitored and treated until they are 21 years of age in the ‘cleft treatment pathway’. Older adults who have left the treatment pathway can also receive treatment through the cleft service if necessary.

The causes of cleft lip /and or palate are not well understood by health professionals but it is believed that genetic factors play a role. In rare cases a baby born with a cleft may have other conditions, some of which will also have a genetic origin.