|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 occasionally makes 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 of 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.
While it is known that folic acid deficiency during pregnancy increases the risk of a cleft developing, there is no firm evidence yet to suggest an intake of higher doses of folic acid prevents clefts. However, mothers from families with a history of clefting are often advised to take higher doses of folic acid during pregnancy. This should be discussed with your doctor.
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 secondhand smoke.
Read more about treatments to help you stop smoking.
Some studies have shown a link between a mother's alcohol consumption during pregnancy and the development of a cleft lip or palate in her baby.
Read more about alcohol in pregnancy.
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 medication you are taking during your pregnancy.
Pierre Robin syndrome
Pierre Robin syndrome is a rare condition where a baby is born with a small lower jaw and a tongue positioned further back in the mouth than usual. This can result in breathing difficulties which requires careful positioning of the baby and, sometimes, a breathing tube placed through the nose.
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.
Treating cleft lip and palate
Cleft lip and palate is usually treated with surgery. Other treatments may be needed to treat associated symptoms, such as speech therapy or dental care.
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 multi-disciplinary cleft team within a specialist centre.
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 for cleft lip and palate 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 monitored closely and any problems can be dealt with.
Important records are taken at key stages of development at age five, 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 any problems can be resolved. Many babies with a cleft palate have problems breastfeeding 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 and using a specially made flexible bottle for feeding.
Lip repair surgery
All types of surgery required for cleft lip and palate are available on the NHS. There are nine centres in England and Wales and further specialist centres in Scotland and Northern Ireland.
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 asleep) and the cleft lip carefully repaired, including underlying muscles. The nose is usually reshaped at the same time.
The operation usually takes between one and two hours, although it can take longer if the cleft is more extensive. The surgery 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 to 12 months old. 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 two hours and is carried out under general anaesthetic.
In some cases, additional surgery may be needed to improve the appearance and function of the lips and palate. Although the palate works well during speech for most children after surgery, in a small number of cases further surgery may be necessary. This may be necessary if the palate is not working sufficiently well for normal speech or if a hole has opened up in the palate during the early stage of healing.
Also, if there is a cleft in the gum (alveolus), the surgeon will perform a bone graft operation to repair the alveolar cleft, usually when the child is around nine to 12 years old.
In some young adults, surgery can be considered if the growth of the jaws are not equal.
Treating associated symptoms
Children with a cleft palate are more likely to develop a condition called glue ear. This is because the muscles in the palate are connected to the middle ear. Because the muscles are not working properly due to the cleft, sticky secretions may build up within the middle ear which may reduce hearing. The condition may improve after cleft palate repair and if necessary, can be treated.
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.
An audiologist (hearing specialist) will assess your child's hearing at birth 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 the first few years.
Speech and language therapy
Repairing a cleft palate will significantly reduce the chance of future speech problems. However, approximately half of all children with a repaired cleft palate still need some form of speech therapy. Further corrective surgery may be required for a small number of children who have increased airflow through their nose when they're speaking.
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. They may also carry out a number of one-to-one exercises with your child. Children born with cleft lip only do not normally need further therapy.
The SLT will work with your child for as long as they need assistance. Therapy is not usually needed after the age of seven.
Watch a video on speech and language therapy.
When the 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. The 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. Treatment can include using braces or other dental appliances to help straighten the teeth. Orthodontic treatment will also monitor the development of the jaws and the bite during growth.
Read more about complications of cleft lip and palate.
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's common for parents to feel guilty, angry, shocked, helpless or disappointed.
However, it's important to realise that in most cases a cleft cannot be prevented and 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's 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 that learning as much as they can about the condition helps them cope better. Talking to other parents in similar circumstances can also help reduce feelings of anxiety and isolation.
Psychological impact in children
A cleft lip and palate 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.
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, as the baby may not be able to suck adequately.
However, feeding can usually be established quickly with assistance and sometimes the use of a special feeding bottle. Tube feeding is very unlikely unless there are also other feeding or swallowing difficulties.
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 their level of hearing and can sometimes cause ear infections.
It is therefore important that all children with a cleft palate have their ears and hearing checked regularly by an audiologist.
See glue ear for more information.
Surgery to repair the cleft lip and palate is generally successful and complications are uncommon.
Cleft lip repair is often carried out when a child is between three and four months old and cleft palate repair when they are between six and 12 months old. Sometimes the timing of surgery may be later if there are good medical reasons for delaying the surgery. The cleft team will discuss with you the appropriate timing of the surgery.
Healing after surgery is good in most cases however healing complications do occur occasionally such as a wound infection or opening of the palate repair line. If this occurs then further surgery may be required.
As the child grows, the palate usually continues to function well for speech. However if it does not, then the cleft team may recommend investigating the palate function further.
Speech and language problems
The roof of the mouth (palate) plays an important role in helping your child form sounds for speech.
If a cleft palate is not repaired with surgery, it will lead to speech problems when the child is older. The cleft palate is therefore carefully repaired before speech development starts and in most 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 regularly and practice good oral hygiene.
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.