Cleft lip and palate

A cleft is a gap or split in the upper lip and/or roof of the mouth (palate). It is present from birth.

The gap is there because parts of the baby's face did not join together properly during development in the womb.

What does a cleft lip and palate look like?

Babies can be born with a cleft lip, a cleft palate, or both.

A cleft lip may just affect one side of the lip or there may be 2 clefts.

It can range from a small notch to a wide gap that reaches the nose.

A cleft palate may just be an opening at the back of the mouth, or it may be a split in the palate that runs all the way to the front of the mouth.

Sometimes it can be hidden by the lining of the roof of the mouth.

Problems related to cleft lip and palate

A cleft lip and cleft palate can cause a number of issues, particularly in the first few months after birth, before surgery is done.

Problems can include:

• difficulty feeding – a baby with a cleft lip and palate may be unable to breastfeed or feed from a normal bottle because they cannot form a good seal with their mouth
• hearing problems – some babies with a cleft palate are more vulnerable to ear infections and a build-up of fluid in their ears (glue ear), which may affect their hearing
• dental problems – a cleft lip and palate can mean a child's teeth do not develop correctly and they may be at a higher risk of tooth decay
• speech problems – if a cleft palate is not repaired, it can lead to speech problems such as unclear or nasal-sounding speech when a child is older

Most of these problems will improve after surgery and with treatments such as speech and language therapy.

Causes of cleft lip and palate

A cleft lip or palate happens when the structures that form the upper lip or palate fail to join together when a baby is developing in the womb.

The exact reason why this happens to some babies is often unclear. It's very unlikely to have been caused by anything you did or did not do during pregnancy.

In a few cases, cleft lip and palate is associated with:

• the genes a child inherits from their parents (although most cases are a one-off)
• smoking in pregnancy or drinking alcohol while pregnant
• obesity during pregnancy
• a lack of folic acid during pregnancy
• taking certain medicines in early pregnancy, such as some anti-seizure medicines

In some cases, a cleft lip or palate can occur as part of a condition that causes a wider range of birth defects, such as 22q11 deletion syndrome (sometimes called DiGeorge or velocardiofacial syndrome) and Pierre Robin sequence.

Diagnosing cleft lip and palate

A cleft lip is usually picked up during the 20-week screening scan done when you're between 18 and 21 weeks pregnant. Not all cleft lips will be obvious on this scan and it's very difficult to detect a cleft palate on an ultrasound scan.

If a cleft lip or palate does not show up on the scan, it's usually diagnosed immediately after birth or during the newborn physical examination done within 72 hours of birth.

Treatments for cleft lip and palate

Your child will usually have a long-term care plan that outlines the treatments and assessments they'll need as they grow up.

The main treatments are:

• surgery – an operation to correct a cleft lip is usually done when your baby is 3 to 6 months and an operation to repair a cleft palate is usually done at 6 to 12 months
• feeding support – you may need advice about positioning your baby on your breast to help them feed, or you might need to feed them using a special type of bottle
• monitoring hearing – a baby born with cleft palate has a higher chance of glue ear, which may affect hearing. Close monitoring of their hearing is important and if glue ear affects their hearing significantly, a hearing aid may be fitted or small tubes called grommets may be placed in their ears to drain the fluid
• speech and language therapy – a speech and language therapist will monitor your child's speech and language development throughout their childhood and help with any speech and language problems
• good dental hygiene and orthodontic treatment – you'll be given advice about looking after your child's teeth, and they may need braces if their adult teeth don't come through properly

Read more about how cleft lip and palate is treated

Outlook for cleft lip and palate

The majority of children treated for cleft lip or palate grow up to have completely normal lives.

Most affected children will not have any other serious medical problems and treatment can usually improve the appearance of the face and problems with feeding and speech.

Surgery to repair a cleft lip may leave a small pink scar above the lips. This will fade over time and become less noticeable as your child gets older.

Will a cleft lip and palate happen again?

Most cases of cleft lip or palate are a one-off and it's unlikely you'll have another child with the condition.

The risk of having a child with a cleft lip or palate is slightly increased if you've had a child with the condition before, but the chances of this happening are thought to be around 2 to 8%.

If either you or your partner were born with a cleft lip or palate, your chance of having a baby with a cleft is also around 2 to 8%.

The chances of another child being born with a cleft or of a parent passing the condition to their child can be higher in cases related to a genetic condition.

For example, a parent with 22q11 deletion syndrome (DiGeorge syndrome) has a 1 in 2 chance of passing the condition to their child.

Information about your child

If your child has a cleft lip or palate, your cleft team will pass information about them to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.

 Treatment Cleft lip and palate 

Children with a cleft lip or palate will need several treatments and assessments as they grow up.

A cleft is usually treated with surgery. Other treatments, such as speech therapy and dental care, may also be needed.

Your child's care plan

Children with clefts will have a care plan tailored to meet their individual needs. A typical care plan timetable for cleft lip and palate is:

• birth to 6 weeks – feeding assistance, support for parents, hearing tests and paediatric assessment
• 3 to 6 months – surgery to repair a cleft lip
• 6 to 12 months – surgery to repair a cleft palate
• 18 months – speech assessment
• 3 years – speech assessment
• 5 years – speech assessment
• 8 to 12 years – bone graft to repair a cleft in the gum area
• 12 to 15 years – orthodontic treatment and monitoring jaw growth

Your child will also need to attend regular outpatient appointments at a cleft centre so their condition can be monitored closely and any problems can be dealt with.

These will usually be recommended until they're around 21 years of age, when they're likely to have stopped growing.

Surgery

Lip repair surgery

Lip repair surgery is usually done when your baby is around 3 months old.

Your baby will be given a general anaesthetic (where they're unconscious) and the cleft lip will be repaired and closed with stitches.

The operation usually takes 1 to 2 hours.

Most babies are in hospital for 1 to 2 days. Arrangements may be made for you to stay with them during this time.

The stitches will be removed after a few days, or may dissolve on their own.

Your child will have a slight scar, but the surgeon will try to line up the scar with the natural lines of the lip, to make it less noticeable. It should fade and become less obvious over time.

Palate repair surgery

Palate repair surgery is usually done when your baby is 6 to 12 months old.

The gap in the roof of the mouth is closed and the muscles and the lining of the palate are rearranged. The wound is closed with dissolvable stitches.

The operation usually takes about 2 hours and is done using a general anaesthetic. Most children are in hospital for 1 to 3 days, and again arrangements may be made for you to stay with them.

The scar from palate repair will be inside the mouth.

Additional surgery

In some cases, additional surgery may be needed at a later stage to:

• repair a cleft in the gum using a piece of bone (a bone graft) – usually done at around 8 to 12 years of age
• improve the appearance and function of the lips and palate – this may be necessary if the original surgery did not heal well or there are ongoing speech problems
• improve the shape of the nose (rhinoplasty)
• improve the appearance of the jaw – some children born with a cleft lip or palate may have a small or "set-back" lower jaw

Feeding help and advice

Many babies with a cleft palate have problems breastfeeding because of the gap in the roof of their mouth.

They may struggle to form a seal with their mouth – so they may take in a lot of air and milk may come out of their nose. They may also struggle to put on weight during their first few months.

A specialist cleft nurse can advise on positioning, alternative feeding methods and weaning if necessary.

If breastfeeding is not possible, they may suggest expressing your breast milk into a flexible bottle that is designed for babies with a cleft palate.

Very occasionally, it may be necessary for your baby to be fed through a tube placed into their nose until surgery is carried out.

Treating hearing problems

Children with a cleft palate are more likely to develop a condition called glue ear, where fluid builds up in the ear and may reduce hearing.

Your child will have regular hearing tests to check for any issues.

Hearing problems may improve after cleft palate repair and, if necessary, can be treated by inserting tiny plastic tubes called grommets into the eardrums. These allow the fluid to drain from the ear.

Sometimes, hearing aids may be recommended.

Read more about treating glue ear

Dental care

If a cleft involves the gum area, it's common for teeth on either side of the cleft to be tilted or out of position. Often a tooth may be missing, or there may be an extra tooth.

A paediatric dentist will monitor the health of your child's teeth and recommend treatment when necessary. It's also important that you register your child with a family dentist.

Orthodontic treatment, which helps improve the alignment and appearance of teeth, may also be required. This can include braces or other dental appliances to help straighten the teeth.

Brace treatment usually starts after all the baby teeth have been lost, but may be necessary before a bone graft to repair the cleft in the gum.

Children with a cleft are more vulnerable to tooth decay, so it's important to encourage them to practise good oral hygiene and to visit their dentist regularly.

Speech and language therapy

Repairing a cleft palate will significantly reduce the chance of speech problems, but in some cases, children with a repaired cleft palate still need speech therapy.

A speech and language therapist (SLT) will assess your child's speech several times as they get older.

If there are any problems, they may recommend further assessment of how the palate is working and/or work with you to help your child develop clear speech. They may refer you to community SLT services near your home.

The SLT will continue to monitor your child's speech until they are fully grown and they will work with your child for as long as they need assistance.

Further corrective surgery may sometimes be required for a small number of children who have increased airflow through their nose when they're speaking, resulting in nasal-sounding speech.

Specialist UK cleft lip and palate centres

England

• Royal Victoria Infirmary, Newcastle-upon-Tyne
• Leeds General Infirmary
• Royal Manchester Children's Hospital
• Alder Hey Children's Hospital, Liverpool
• Nottingham City Hospital
• Birmingham Children's Hospital
• Addenbrooke's Hospital, Cambridge
• Great Ormond Street Hospital, London
• Broomfield Hospital, Chelmsford
• John Radcliffe Hospital, Oxford
• Salisbury District Hospital
• Bristol Dental Hospital
• Guy's and St Thomas' Hospital, London

Wales

• Morriston Hospital, Swansea

Scotland

• Royal Hospital for Sick Children, Glasgow

Northern Ireland

• Children's Hospital, Belfast