|Cleft lip and palate|
A cleft is a gap 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 during pregnancy.
The face and upper lip develops during the fifth to ninth week of pregnancy. Most cleft problems can either be picked up at the routine 20 week scan, or soon after birth. However, a submucous cleft, where the cleft is hidden in the lining of the roof of the mouth may not be detected for months or even years.
Learn more in diagnosing cleft lip and palate.
A cleft can lead to feeding, speech, hearing problems, ear infections, dental decay, jaw development problems and psychosocial issues. Learn more in complications of cleft lip and palate.
What causes cleft lips and palates?
The exact cause of clefts is not known although evidence suggests they are caused by a combination of genetics and enviromental factors such as smoking and drinking in early pregnancy, and a lack of folic acid in the mother's diet.
Cleft lips and palates can occur on their own (non-syndromic) or are sometimes part of a wider series of birth defects (syndromic).
Learn more in the causes of cleft lip and palate.
Who is affected?
A cleft lip and palate is the most common facial birth defect in the UK. One in every 700 babies is born with a cleft. The type of cleft and how severe it is can vary widely between children.
Approximately half of all affected babies are born with a cleft lip and palate, a third with a cleft palate only and 1 in 10 have a cleft lip only or a submucous cleft.
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.
Surgery is the usual treatment for cleft lip and palate, with good results. After treatment, most children have a normal appearance with minimal scarring and normal speech.
All types of treatment for cleft lip and palate are available on the NHS. 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.
Learn more in treatment for cleft lip and palate.
Symptoms of cleft lip and palate
There are two types of cleft lip:
The appearance of the cleft lip 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 associated symptoms, outlined below.
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 roof of the mouth.
Take your child to see your GP if they develop the following symptoms:
These symptoms may indicate a submucous cleft palate.
Learn more in diagnosing cleft lip and palate.
Causes of cleft lip and palate
A cleft lip or palate happens when the structures that form the upper lip or palate fail to fuse together properly when a baby is developing in the womb.
In most cases the exact cause is unknown, but it's thought to be a combination of genetic (internal) and environmental (external) factors.
Research indicates that the genes a child inherits from their parents make them more vulnerable to developing a cleft lip or palate. A number of genes have been identified that may be responsible.
In some cases, there is a family history of clefts, although most children of parents with clefts will not develop them.
Environmental risk factors
A number things have been identified that may increase a child's chance of being born with a cleft lip or palate. These are outlined below.
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. One study found the risk of having a child born with cleft lip or palate was more than four times higher if mothers did not take folic acid in their first three months of pregnancy.
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.
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.
Obesity and nutrition
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.
Medications during pregnancy
It has been suggested that some medications taken during pregnancy may increase the risk of cleft lip and palate. These include:
Speak to your GP or midwife if you are concerned about any 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.
The cleft can usually be repaired with surgery, although treatment may be delayed if there are continuing issues with airway obstruction. The lower jaw usually has some 'catch up' growth later and orthodontic treatment can further help the bite.
If you have a deficiency, you are lacking in a particular substance needed by the body.
Genetic is a term that refers to genes, the characteristics inherited from a family member.
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.
Diagnosing cleft lip and palate
Clefts in unborn babies are often picked up with an ultrasound examination during the routine 20 week antenatal appointment. The cleft nurse specialist will then normally be in contact with you and arrange to meet you.
If a cleft lip or palate is not detected during the scan, it is nearly always diagnosed soon after birth. However, some clefts, for example a submucous cleft palate where the cleft is hidden in the lining of the roof of the mouth may not be detected for several months or even years, when speech problems develop (see symptoms of cleft lip and palate).
Specialist cleft team
As soon as a cleft has been diagnosed, you and your child will be referred to a cleft team. An arrangement can also be made for a specialist nurse to visit you to help with feeding and answer any questions you have. The specialist nurse will liaise with other healthcare professionals involved with your child's care.
Learn more about your child's care team in treatment of cleft lip and palate.
Treating cleft lip and palate
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
In England, all children born with a cleft are 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:
The core members of the team will be available at the outpatient cleft clinic appointments to give you advice and answer any questions you may have.
Care plan timetable
Most children with clefts will receive the same type of care plan tailored to meet their individual needs. A typical care plan timetable is described below.
Once the initial care plan has been completed, your child will attend regular outpatient appointments at the cleft clinic so their condition can be closely monitored and problems dealt with. Important records are taken at key stages at development, at age 5,10, 15 and 20 years, to monitor how treatment has progressed over time.
If your baby has a cleft, their feeding will need to be assessed so 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 advise on 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.
All types of surgery required for cleft lip and palate are available on the NHS. There are 19 centres in the UK that specialise in the treatment of cleft lip and palate.
Lip-repair surgery is usually carried out when your child is three months old. Your child will be given a general anaesthetic (where they are unconcious) and the cleft lip carefully repaired, including 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 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 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.
The operation usually takes about one-and-a-half hours and it's carried out under general anaesthetic.
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. If the jaws have not grown equally, they can be corrected by braces and jaw surgery at the end of growth, at approximately 18 years of age.
Your cleft care team can tell you whether further surgery is required.
Children with a cleft palate are more likely to develop a condition called glue ear. If hearing is significantly reduced, the ENT surgeon may recommend inserting 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
Repairing a cleft palate will significantly reduce chances of future speech problems. However, approximately half of all children with a repaired cleft palate still need 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 speech exercises to help your child's development. Children born with cleft lip only do not normally need further therapy. 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. Therapy is not usually needed after the age of seven, though specialist investigations may be necessary. In some cases, further surgery may be needed to improve your child's speech.
When the cleft involves the gum area, it is 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. The paediatric dentist will monitor the health of your child's teeth and recommend treatment when necessary. It is also important 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 teeth. Orthodontic treatment will also monitor the development of the jaws and the bite during growth.
Children with a cleft are more vulnerable to tooth decay, so it is important to encourage them to practise good oral hygiene. See complications of cleft lip and palate for more information.
Problems related to a cleft lip and palate
Giving birth to a baby with a cleft can have a profound psychological impact both on the parents and the child.
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 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 you have and ask as many questions as you want.
Some parents find learning as much as they can about the condition helps them cope better. Also, talking to other parents in similar circumstances can help reduce feelings of anxiety and isolation.
Psychological impact in children
A cleft can also have a psychological impact on a child, particularly as they get older and begin to mix with other children.
Experts advise explaining the condition to your child as soon as they are old enough to understand. Treat it as a normal topic of conversation. The clinical psychologist in the team will be able to give further support with this.
It is best to be realistic about the possible length of treatment 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 can arrange an assessment and any necessary counselling and support.
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.
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 by an audiologist.
See glue ear for more information.
Speech and language problems
The roof of the mouth (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 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.
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.
Children with clefts are more likely to develop tooth decay. This is partly due to crowding of the teeth, which makes it more difficult to keep them clean. The advice below may help reduce your child's risk of developing tooth decay.
See the Health A-Z topic about Dental care for babies and children for more information and advice.
Preventing cleft lip and palate
In many cases, it is not possible for a cleft lip and palate to be prevented. However, pregnant women can lower the risk of their child being born with a cleft lip and palate by following the advice below.
Avoid smoking and drinking alcohol while pregnant
During pregnancy, maintain a healthy lifestyle and avoid smoking and drinking alcohol. Ensuring you have a healthy pregnancy will help reduce risks of your baby developing a cleft.
See The pregnancy care planner for more information and advice on how to have a healthy pregnancy.
Folic acid supplements
The Department of Health recommends all women 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.
Taking folic acid is known to cut down on other birth defects and there is increasing evidence that taking folic acid in early pregnancy cuts the risk of cleft lip and palate births. One 2012 study of 11,000 babies born in Ireland found the risk was more than four times higher for mothers who did not take folic acid in their first three months of pregnancy.