Cleft lip and palate

Overview

A cleft is a gap or a 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 didn't join together properly during development in the womb.

A cleft lip and palate is the most common facial birth defect in the UK, affecting around one in every 700 babies.

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 two clefts.

It can range form 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.

The Cleft Lip and Palate Association has a photo gallery with pictures of cleft lips and palates before and after surgery.

Problems related to cleft lip and palate

Cleft lips and cleft palates can sometimes cause a number of issues, particularly in the first few months, before surgery is carried out.

Problems that can occur include:

difficulty feeding - babies with a cleft palate may be unable to breastfeed or feed from a normal bottle because they can't form a good seal with their mouth
hearing problems - some babies with a cleft lip are more vulnerable to ear infections and 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 don't develop correctly and they may be at a higher risk of tooth decay
speech problems - if a cleft palate isn't 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

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 doesn't happen in some babies is often unclear. It's very unlikely to have been the result of anything you did or didn't 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 during pregnancy or drinking alcohol during pregnancy
obesity during pregnancy
a lack of folic acid during pregnancy
taking certain medicines in early pregnancy, such as some anti-seizure medications and steroid tablets

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

Diagnosis

Cleft lips are usually picked up during the mid-pregnancy anomaly scan carried out when you're

between 18-21 weeks pregnant. Not all cleft lips will be obvious on this scan and it's very difficult to detect a cleft palate on a routine ultrasound scan.

If a cleft lip or palate doesn't show up on the scan, it's normally picked up immediately after birth or during the newborn physical examination done within 72 hours of giving birth.

When a cleft lip or palate is diagnosed, you'll be referred to a specialist NHS cleft team who will explain your child's condition, discuss the treatments they may need and answer any questions you have.

You may also find it useful to contact a support group, such as the Cleft Lip and Palate Association, who can offer advice and put you in touch with parents in a similar situation.

Treatments for cleft lip and palate

Cleft lips and cleft palates are treated at specialist NHS cleft centres.

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

The main treatments are:

surgery – surgery to correct a cleft lip is usually carried out at 3-6 months and an operation to repair a cleft palate is usually performed at 6-12 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 specially-designed bottle
monitoring hearing – babies born with cleft palates have 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 – if your baby is born with a cleft affecting their palate (cleft palate or cleft lip and palate) a speech and language therapist will monitor your child's speech and language development throughout their childhood; they will help with any speech and language problems as necessary
good dental hygiene and orthodontic treatment – you'll be given advice about looking after your child's teeth, and braces may be needed if their adult teeth don't come through properly

Outlook

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

Most affected children won't have any other serious medical problems and treatment can normally improve the appearance of the face and resolve issues such as feeding and speech problems.

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

Some adults who've had a cleft lip or palate repair may be self-conscious or unhappy about their appearance. Your GP may refer you back to an NHS cleft centre for further treatment and support if there are any ongoing issues.

Will a cleft lip and palate happen again?

Most cleft lips and palates 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 2-8%.

If either you or your partner were born with a cleft, your chance of having a baby with a cleft is also around 2-8%. Most children of parents who had a cleft will not be born with a cleft.

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 genetic conditions.

For example, a parent with 22q11 deletion syndrome (DiGeorge syndrome) has a 50% chance of passing the condition to their child.

Information about your child

If your child has a cleft lip or palate, your clinical team will pass information about him or her on to the National Congenital Anomaly and Rare Diseases 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

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

The cleft is usually treated with surgery. Other treatments, such as speech therapy or dental care, may be needed for associated symptoms.

Your child will be cared for by a specialist multidisciplinary cleft team within an NHS cleft centre.

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

Your child will also need to attend regular outpatient appointments at the cleft clinic 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 carried out when your child is around three months old.

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

The operation usually takes one to two hours.

Most children are in hospital for a day or two. Arrangements may be made for you to stay with them during this time.

The stitches are removed after a few days or may dissolve on their own depending on the type of stitches used.

Your child will have a slight scar, but the surgeon will attempt 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 carried out when your child is 6-12 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 two hours and is carried out under general anaesthetic. Most children are in hospital for one to three 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 carried out at a later stage to:

repair a cleft in the gum using a piece of bone (bone graft) – usually done at around 8-12 years of age
improve the appearance and function of the lips and palate – this may be necessary if the original surgery doesn't heal well or there are any 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 isn't possible, they may suggest expressing your breast milk into a flexible bottle that is specially 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.

This is because the muscles in the palate are connected to the middle ear. If the muscles aren't working properly because of the cleft, sticky secretions may build up within the middle 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.

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.

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

Brace treatment usually starts after all the baby teeth are lost, but may be necessary before the bone graft, to repair the cleft of 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 future speech problems, but in some cases, children with a repaired cleft palate still need some form of speech therapy.

A speech and language therapist (SLT) will carry out several assessments of your child's speech 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 nearer to 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 sites

England

Royal Victoria Infirmary, Newcastle-upon-Tyne
Leeds General Infirmary
Royal Manchester Children's Hospital
Alder Hey Children's Hospital, Liverpool
Nottingham Children's 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 Royal Hospital for Children
Guy's and St Thomas' Hospital, London

Wales

Morriston Hospital, Swansea

Scotland

Royal Hospital for Sick Children, Edinburgh
Royal Hospital for Sick Children, Glasgow

Northern Ireland

Children's Hospital, Belfast

The information on this page has been adapted by NHS Wales from original content supplied by

NHS website nhs.uk