Cleft lip and palate

Page last reviewed: 13/07/2011

A cleft is a separation or split in either the upper lip or the roof of the mouth (palate) or sometimes both. It occurs when separate areas of the face do not join together properly when a baby is developing in the womb.

The development of the face and the upper lip takes place during the fifth to ninth week of pregnancy.

Cleft lips and palates can occur on their own (non-syndromic) or are sometimes part of a wider series of birth defects (syndromic).

How common are cleft lips and palates?

A cleft lip and palate is the most common facial birth defect in Ireland. One in every 700 babies is born with a cleft. The type of cleft and how severe it is varies between children.

The exact cause of clefts is unknown. However, most researchers believe they are caused by a combination of environmental and genetic factors

Approximately half of all affected babies are born with a cleft palate, a quarter have a cleft lip and a quarter have a cleft lip and palate.

A cleft lip or combined cleft lip and palate are more common in boys, but a cleft palate on its own is more common in girls.

Outlook

A cleft lip and palate can be corrected using surgery. The procedure has a high success rate and leaves minimal scarring. After treatment, most children have a normal appearance and achieve normal speech.

All types of treatment for cleft lip and palate are available from the HSE. A long-term, structured care plan from a team of cleft specialists is usually needed to help children born with clefts. Ongoing or follow-up treatment that lasts for up to 20 years is often required.

Page last reviewed: 13/07/2011

There are two types of cleft lip:

  • unilateral cleft, where the cleft occurs on one side of the lip
  • bilateral cleft, where the cleft occurs on both sides of the lip

The appearance of the cleft can be anything from a small notch in the lip (incomplete cleft) to a wide gap that runs all the way up to the nostril (complete cleft lip).

The appearance of a cleft palate can be anything from an opening at the back of the soft palate towards the throat to an almost complete separation of the roof of the mouth.

As well as affecting appearance, a cleft lip and palate can also cause a number of associated symptoms, which are outlined below.

Feeding problems

Babies with a cleft may have problems feeding, particularly if the cleft includes the palate because the baby may not be able to suck adequately. However, with assistance and sometimes the use of a special feeding bottle, feeding can usually be quickly established.

Ear infections and hearing impairments

Children with a cleft palate often develop a condition called glue ear, where sticky fluid collects in the middle ear behind the eardrum. This may reduce the level of hearing and can sometimes cause ear infections. Therefore, it is important that all children with a cleft palate have their ears and hearing checked regularly.

Speech and language problems

The palate plays an important role in helping your child form normal sounds for speech.

If a cleft palate is not repaired with surgery, it will lead to speech problems when the child is older. Therefore, the cleft palate is carefully repaired before speech development so that, in many cases, the child goes on to develop normal speech. 

About half of all children with a repaired cleft palate will need to have speech therapy, and a small number may need further surgery. Over time, a specialist speech and language therapist will monitor the child's speech development.

Dental health

A cleft lip and palate can cause changes to the structure of the mouth and lead to problems with the development of teeth, making children more vulnerable to tooth decay. It is therefore important for the child to have their teeth checked and closely monitored regularly.

Psychological issues

A cleft lip or palate can have a psychological impact on both the child and their parents. For example, the parents may feel guilty or angry. Psychological support and counselling may sometimes be required.

Hidden cleft palate

A cleft lip and palate are visible at birth. However, one type of cleft palate, known as a submucous cleft palate, can be hidden by the lining of the mouth.

Take your child to see your GP if they develop the following symptoms:

  • feed that frequently escapes down the nose
  • inability to suck through a straw or blow out candles
  • nasal-sounding speech

These symptoms may indicate a submucous cleft palate.

Page last reviewed: 13/07/2011

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

The causes may be genetic (internal) or environmental (external), although it is most often thought to be a combination of these factors. In most cases of cleft lip or palate, there is no recognisable cause.

Inherited genes

Research indicates that the genes a child inherits from their parents can make them more vulnerable to developing a cleft lip or palate. Researchers have identified a number of genes that may be responsible.

In some cases, there is a family history of clefts, although most children of parents with clefts will not develop clefts themselves.

Environmental risk factors

A number of environmental risk factors have been identified that may increase a child's chance of being born with a cleft lip or palate. These are outlined below.

Maternal smoking

A mother who smokes during pregnancy increases her baby's chance of being born with a cleft. The risks from passive smoking are not fully known, but it is a good idea to avoid breathing in high levels of second-hand smoke.

Maternal alcohol consumption

Some studies have shown a link between a mother's alcohol consumption during pregnancy and the development of a cleft lip and palate in her baby.

Maternal obesity

Mothers who are obese have a higher chance of their child being born with a cleft. Poor nutrition during pregnancy can also increase the risk.

Lack of folic acid during pregnancy

All pregnant women are advised to take a daily supplement of folic acid during the first four months of pregnancy. Folic acid helps reduce the possibility of birth defects, such as spina bifida (a series of birth defects that affect the development of the spine and nervous system) and cleft palate.

Medications during pregnancy

It has been suggested that some medications taken during pregnancy may increase the risk of cleft lip and palate. These include:

  • methotrexate, a medicine that is used to treat cancer, arthritis and psoriasis
  • isotretinoin, a medicine that is used to treat acne
  • anti-seizure medicine

Speak to your GP or midwife if you are concerned about any of the medications you are taking during your pregnancy.

Pierre Robin syndrome

Pierre Robin syndrome is a rare condition where a baby is born with an abnormally small lower jaw that causes the tongue to fall backwards in their throat (glossoptosis). This can result in obstruction and breathing difficulties.

Most infants with Pierre Robin syndrome will also have a cleft palate, which can usually be repaired with surgery. However, sometimes the surgery has to be delayed if there are continuing issues with airway obstruction.

Deficiency

If you have a deficiency, you are lacking in a particular substance needed by the body.

Genetic

Genetic is a term that refers to genes, the characteristics inherited from a family member.

Tissues

Body tissue is made up of groups of cells that perform a specific job, such as protecting the body against infection, producing movement or storing fat.    

Page last reviewed: 13/07/2011

Clefts in unborn babies are often detected with a ultrasound examination during a routine antenatal appointment. This antenatal scan takes place at around 20 weeks and enables parents to discuss any questions or concerns that they have with specialist nurses.

If a cleft lip or palate is not picked up during an antenatal appointment, the cleft is nearly always diagnosed soon after birth. However, in some cases, for example a submucous cleft palate where the cleft is hidden in the lining of the mouth, it may not be picked up for several months or even years, when speech problems develop

Cleft team

As soon as a diagnosis has been made, you and your child will be referred to a cleft team. An arrangement can also be made for a specialist nurse to visit you as soon as possible to help with feeding and give you information and advice. They will also be able to answer any questions you have. The specialist nurse will liaise with the other healthcare professionals involved with your child's care.

Ultrasound scans
Ultrasound scans are a way of producing pictures of inside the body using sound waves.

Page last reviewed: 13/07/2011

In this section, the term cleft refers to a cleft lip, cleft palate or a cleft lip and palate. Specific types of cleft are only referred to when necessary.

Cleft clinics and treatment teams

All children born with a cleft will be referred to a specialist cleft clinic. Specialist cleft clinics are dedicated medical centres that provide ongoing support to children and parents.

The cleft treatment team is made up of healthcare professionals from different specialist backgrounds who work closely together. The team includes:

  • a specialist cleft nurse, who can provide initial advice about feeding and will act as your first point of contact 
  • a cleft surgeon, who will carry out the repair of the cleft
  • a speech and language therapist
  • an orthodontist, who specialises in straightening teeth with braces (an appliance that is fitted in the mouth to help correct the position of the teeth)
  • a paediatric (children's) dentist
  • an audiologist and ear, nose and throat (ENT) surgeon, who assesses and treats hearing conditions
  • a psychologist, who has been trained in the scientific study of the mind
  • a paediatrician, who specialises in treating children

Care plan timetable

Most children with clefts will receive the same type of care plan, which will be tailored to meet their individual needs. A typical care plan timetable is described below.

  • birth to 6 weeks: examination to diagnose cleft lip and palate, counselling for parents, hearing test and feeding assessment
  • 3 months: surgery to repair a cleft lip
  • 6-12 months: surgery to repair a cleft palate
  • 18 months: speech assessment
  • 3 years: speech assessment
  • 5 years: speech assessment
  • 8-11 years: bone graft to the cleft in the gum area (alveolus)
  • 2-15 years: orthodontic treatment

Once the initial care plan has been completed, your child will attend regular outpatient appointments at the cleft clinic so that their condition can be closely monitored and any problems dealt with.

Feeding

If your baby has a cleft, their ability to feed will need to be assessed so that any problems can be dealt with. Many babies with a cleft palate have problems sucking through a nipple due to the gap in the roof of their mouth.

If your baby has difficulty feeding, your specialist cleft nurse can give you advice about alternative feeding methods. Some babies respond better to alternative feeding methods than others.

One method that works well for some women is expressing breast milk into a specially made flexible bottle and using the bottle for feeding.

Lip-repair surgery

Lip-repair surgery is usually carried out when your child is three months old. Your child will be given a general anaesthetic (put to sleep) and the cleft lip will be carefully repaired, including the underlying muscles. The nose is usually reshaped at the same time.

The operation usually takes about an hour, although it can take longer if the cleft is particularly severe. The operation usually leaves 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.

Palate-repair surgery

Palate-repair surgery is usually carried out when your child is six months of age. The muscles and the lining of the palate are rearranged and usually no extra tissue is needed to complete the operation.

Your child will be given a general anaesthetic and the operation will usually take about one-and-a-half hours. Again, the exact time will vary depending on how severe the cleft is.

Additional surgery

In some cases, additional surgery may be needed to improve the appearance and function of the lips and mouth. For example, if there is a cleft in the gum, the surgeon will perform a bone-graft operation when the child is between 9 and 12 years of age.

Your cleft care team can tell you whether further surgery is required.

Hearing

Children with a cleft palate are more likely to develop a condition called glue ear. The eustachian tube, which connects the back of the nose with the middle ear, may not open and close properly due to the cleft palate.

This causes sticky secretions to build up in the middle ear, which can impair hearing. If hearing is significantly reduced, the ENT surgeon may recommend treatment, such as the insertion of a tiny plastic tube called a grommet into the eardrum. This lets out the sticky secretions and allows air in. Sometimes, a hearing aid may be recommended.

At birth, an audiologist (hearing specialist) will assess your child's hearing and a second hearing assessment will take place once your child has had reconstructive surgery. Your child's hearing will also be regularly assessed during their outpatient appointments.

Speech and language therapy

Surgery to repair a cleft palate will significantly reduce the chances of any future speech problems occurring. However, approximately half of all children with a repaired cleft palate will still need to have some form of speech therapy. The speech of a small number of children will have a nasal tone and further corrective surgery may be required.

A speech and language therapist (SLT) will carry out an initial assessment after surgery, followed by a further assessment once your child is three years old. If the assessment reveals problems with your child's pronunciation and use of language, the SLT will teach you a number of speech exercises that you can use to help your child's development. They may also carry out a number of one-to-one exercises with your child.

The SLT will work with your child for as long as they need assistance, although therapy is not usually needed after the age of seven. In some cases, further surgery may be needed to help improve your child's speech.

Dental care

When the cleft involves the gum area, it is common for the teeth on either side of the cleft to be tilted or out of position. Sometimes, a tooth may be missing or there may be an extra tooth. The paediatric dentist will monitor the health of your child's teeth and recommend treatment when necessary. It is also important that you register your child with a family dentist.

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

Children with a cleft are more vulnerable to tooth decay, so it is important to encourage them to practise good oral hygiene.

Anaesthetic
Anaesthetic is a drug used to either numb a part of the body (local) or to put a patient to sleep (general) during surgery.

Page last reviewed: 13/07/2011

Psychological impact

Parents

Giving birth to a baby with a cleft can have a profound psychological impact on the child's parents. It is common for parents to feel guilty, angry, shocked, helpless or disappointed.

It is important to realise that, in most cases, a cleft cannot be prevented and that you are not to blame. Some parents may worry that they will be unable to bond with a child who has a cleft, but there is no evidence this is the case.

Your cleft care team will be used to supporting parents during the difficult time that can follow the birth of a baby with a cleft. Take this opportunity to express any concerns and worries that you have and ask as many questions as you want.

Some parents find that learning as much as they can about the condition helps them to cope better. Also, talking to other parents in similar circumstances can help reduce feelings of anxiety and isolation.

Children

A cleft can also have a psychological impact on a child, particularly as they get older and begin to mix with other children.

It is recommended that you are entirely open about the nature of your child's condition as soon as they are old enough to understand. Treat it as a normal topic of conversation and not a guilty secret that nobody should talk about.

It is best to be realistic about the possible length of treatment that your child might require and its likely outcomes. Ongoing treatment lasting for up to 20 years is usually required for most children with a cleft. Although this can be upsetting, giving your child false hope and unrealistic expectations could be more damaging in the long run.

You can also help strengthen your child's independence by involving them in the decision-making process about their treatment and their life in general.

If you are worried about your child's social or psychological development, speak to your specialist cleft nurse. They will be able to arrange an assessment and any necessary counselling and support.

Tooth decay

Children with clefts are more likely to develop tooth decay. This is partly due to crowding of the teeth, which makes it more difficult for them to keep their teeth clean.

The advice below may help reduce your child's risk of developing tooth decay.

  • Your child should have a dental check-up at least once every six months.
  • Encourage your child to brush their teeth after every main meal. When they are at school, you could put a small tube of toothpaste and a toothbrush in their lunchbox.
  • Using a fluoride mouthwash once a day will help protect your child's teeth against decay.
  • Limit the amount of sweet and sticky food and drink your child eats and drinks because they can increase the risk of tooth decay.
  • Limit the amount of starchy foods that your child eats, such as crisps, white bread and biscuits.

Page last reviewed: 13/07/2011

In many cases, it is not possible for a cleft lip and palate to be prevented. However, pregnant women can do certain things to lower the risk of their child being born with a cleft lip and palate. These are described below.

Avoid smoking and drinking alcohol while pregnant

During pregnancy, maintain a healthy lifestyle and avoid smoking and drinking alcohol. Ensuring that you have a healthy pregnancy will help reduce the risks of your baby developing a cleft.

Folic acid supplements

The Department of Health recommends that all women should take a daily supplement of 0.4mg of folic acid before they conceive and for the first 12 weeks of pregnancy while the baby's spine develops.

Some doctors also believe that taking folic acid supplements during pregnancy may reduce the risk of cleft lip and palate. However, this has not been proven in scientific studies.

Dose
Dose is a measured quantity of a medicine to be taken at any one time, such as a specified amount of medication.

Content provided by NHS Choices www.nhs.uk and adapted for Ireland by the Health A-Z.

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