Frequently asked questions (FAQ)

Cleft lip and palate is a congenital condition in which the lip, jaw and/or palate do not fully fuse during embryonic development. It affects approximately 1 in 500 births and is one of the most common congenital facial anomalies worldwide.

'Harelip' is an outdated folk term for a cleft lip; 'cleft palate' (used colloquially as a single term) sometimes confusingly refers to different conditions. The correct medical terms are cleft lip, cleft palate, and cleft lip and palate.

In an isolated cleft palate, only the palate is split — the lip and jaw are intact. Because the anomaly is inside the mouth, it is not visible from the outside and is rarely detectable on ultrasound. The submucous form is often only discovered due to speech problems.

The causes are multifactorial: genetics and environmental factors interact. Known risk factors include smoking, alcohol, folic acid deficiency during pregnancy, and certain medications. In most cases, no single cause can be identified.

There is a genetic component, but no simple inheritance pattern. The recurrence risk for further children is approximately 2–5 %. Genetic counselling provides precise, family-specific information.

Complete prevention is not possible. Folic acid (at least 0.4 mg/day from 4 weeks before conception through the end of the 1st trimester) can reduce the risk of non-syndromic forms. Smoking and alcohol should be avoided.

Smoking and alcohol statistically increase the risk — but are not inevitable causes. The condition is complex and in most cases could not have been prevented. Parents should not blame themselves.

Cleft lips and cleft lip and palates can be detected on ultrasound from around 18–20 weeks of gestation. An isolated cleft palate is rarely detectable prenatally because the palate is difficult to visualise on ultrasound.

A prenatal diagnosis gives parents valuable time to prepare and enables early contact with a specialised treatment team. The pregnancy itself is not put at risk — a cleft does not threaten the child in the womb.

The palate is difficult to visualise on ultrasound. After birth, a cleft palate is identified by direct oral inspection or through feeding difficulties. Submucous forms are often only noticed because of speech problems.

Yes. With modern surgical and multidisciplinary approaches, cleft lip and palate can be treated very successfully. The goal is complete functional and aesthetic rehabilitation. The vast majority of individuals affected lead a normal life.

Multiple operations are usually needed – the number and timing vary by cleft type, functional findings and centre concept. For a complete cleft lip and palate, the typical pathway includes lip repair (around 3–6 months), palate repair (around 9–18 months) and alveolar bone grafting (around 9–11 years). Further procedures such as rhinoplasty or velopharyngoplasty may be needed.

An isolated cleft lip often allows breastfeeding. With a cleft palate, breastfeeding is difficult because the baby cannot generate adequate suction. Expressed breast milk given via a specialised bottle is recommended.

Specially designed feeding systems such as the Haberman Feeder (Medela SpecialNeeds), the Mead Johnson Cleft Palate Nurser, or squeeze bottles enable feeding without suction. The right system is chosen together with the treatment team.

A palatal plate (feeding plate or obturator) is a custom-made plastic plate that covers the cleft palate. It makes feeding easier, improves tongue position, and is used in some treatment protocols for pre-surgical jaw shaping (NAM).

For the first weeks after palate surgery, only soft or pureed food is allowed. Hard, sharp or crumbly foods and objects placed in the mouth must be avoided. The treatment team provides written post-operative instructions.

Children with an isolated cleft lip have no increased speech risk. With a cleft palate, the risk of speech problems is higher. Many children catch up after palate repair; regular speech monitoring and early speech therapy are part of routine follow-up.

Velopharyngeal insufficiency (VPI) means incomplete separation of the mouth and nasal cavity during speech, resulting in nasal speech (rhinolalia) and imprecise articulation. Treatment is via speech therapy and/or surgery (velopharyngoplasty).

Craniosynostosis is the premature fusion of one or more skull sutures, causing abnormal skull shape. Surgical treatment typically takes place in the first year of life.

Crouzon syndrome is a hereditary syndromic craniosynostosis (FGFR2 mutation) characterised by multiple suture fusion, prominent eyes (exophthalmos) and a flat midface. Intelligence is usually normal. Prevalence approximately 1:25,000.

Apert syndrome is a syndromic craniosynostosis (FGFR2) with a tower-shaped skull, flat midface and fusion of fingers and/or toes (syndactyly). Prevalence approximately 1:65,000. Treatment is complex and extends over many years.

Pierre Robin sequence combines a small, recessed lower jaw (micrognathia), a posteriorly displaced tongue (glossoptosis) and usually a cleft palate. The tongue can obstruct the airway — immediate airway management at birth is essential.

Non-syndromic: isolated cleft without other anomalies. Syndromic: the cleft is part of a syndrome with additional features (approximately 30 % of all cases). Syndromic forms require more extensive diagnostic work-up and broader multidisciplinary care.

Midface distraction is a surgical technique in which the midface is gradually moved forward using an internal or external distractor over several weeks. It is used for midface hypoplasia, e.g. in Crouzon or Apert syndrome.

An open, matter-of-fact approach to the topic, age-appropriate explanations and building self-esteem are key. Specialist psychological support and contact with self-help groups are very valuable for children and families alike.

Most children with a cleft lip and palate attend mainstream school without limitations. With a cleft palate, there is a slightly increased risk of reading and writing difficulties. Early speech therapy and close collaboration with teachers help identify and address challenges promptly.