Cleft lip

A cleft is a hole or gap affecting the tissues in the lip. This information sheet from Great Ormond Street Hospital (GOSH) explains the causes, symptoms and treatment of cleft lip and where to get help.

The size of the cleft varies from child to child – some children may only have a tiny notch whereas in others, the cleft may stretch up from the lip to the base of the nose. The cleft can affect one side of the lip (unilateral) or both sides (bilateral).

The palate (roof of the mouth) can also have a cleft, which again varies in size from child to child. A cleft palate can occur alongside a cleft lip or separately. Cleft lip and/or palate is a relatively common condition, affecting around one in 700 babies.

Clefts occur early in pregnancy when the head and neck and forming. For reason we do not yet know, the two halves do not join together as they should. This leaves a gap in the lip and/or palate. Doctors think that a combination of genetic and environmental factors may cause clefts but more research is needed. Most cases of cleft lip occur sporadically (out of the blue) although some children have parents or other relatives who have also had a cleft lip.

Cleft lip can also develop as part of a syndrome – a collection of symptoms often seen together. There are over 150 syndromes that feature cleft lip. The doctors will examine the child closely to check for any other symptoms.

The cleft in the lip is the only symptom but this can have an effect after birth on feeding. The cleft means that the baby may find it difficult to form a seal around the breast or bottle.

Some children with a cleft lip can also have a cleft defect in the alveolus – the bone that holds our teeth in place. If there is an alveolar cleft, the teeth near it may erupt in the wrong place or may not erupt at all. Sometimes, the teeth near a cleft may be absent, have an unusual shape or there can be extra teeth.

Cleft lip can sometimes be diagnosed during routine prenatal ultrasound scans at around 20 weeks. Knowing in advance helps families to plan for the birth (which in most cases is not affected at all by the cleft) and get to know the cleft team in advance.

Either before birth (if diagnosed with an ultrasound scan) or immediately after birth, your child will be referred to their local specialist cleft centre – Great Ormond Street Hospital (GOSH) hosts the North Thames Cleft Lip and Palate Service jointly with Broomfield Hospital in Essex. The service is the largest in the UK and the team works across both sites providing treatment to an average of 150 to 170 new babies per year born with a cleft lip and/or palate.

All children diagnosed with cleft lip in the UK follow a similar treatment pathway, with the aim of improving outcomes for all children. As a rough guide, cleft lip repair surgery happens between three and six months of age. Further surgery may be needed at various stages of childhood and adolescence, such as alveolar bone graft surgery to implant bone into the cleft in the jaw or surgery to improve the appearance of the upper jaw (orthognathic surgery) or the nose (rhinoplasty).

Young people will continue to be monitored throughout childhood and adolescence and may need further support such as specialist dental treatment. There are few long term effects of cleft lip and/or palate and children grow up to lead normal lives, studying and working.