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Cleft lip and cleft palate
Cleft lip and cleft palate

 


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Condition
Cleft lip, cleft palate
Class
Developmental
Description
Cleft lip and cleft palate are developmental problems in babies where the two sides of the upper lip or the two sides of the palate (the roof of the mouth) do not join together leaving a gap or cleft.

The condition affects about 1 in 700 babies in the UK, approximately 1000 babies each year, and is more common in boys than in girls.

A cleft lip creates an opening in the upper lip between the mouth and nose. It looks as though there is a split in the lip. It can range from a slight notch in the coloured portion of the lip to complete separation in one or both sides of the lip extending up and into the nose. A cleft on one side is called a unilateral cleft. If a cleft occurs on both sides it is called a bilateral cleft. A cleft in the gum may occur in association with a cleft lip. This may range from a small notch in the gum to a complete division of the gum into separate parts.

A cleft palate occurs when the roof of the mouth has not joined completely. The back of the palate (towards the throat) is called the soft palate and the front (towards the mouth) is known as the hard palate. A cleft palate can range from just an opening at the back of the soft palate to a nearly complete separation of the roof of the mouth (soft and hard palate).

Sometimes a baby with a cleft palate may also have a small lower jaw and a few babies with this combination may have difficulty breathing. This condition may be called Pierre Robin Sequence.
Causes
During early pregnancy the lip and palate develop from tissues on either side of the tongue. As these tissues grow, they move toward each other and eventually join together in the middle. If the tissues fail to join in the upper lip a cleft lip is formed, if they fail to join in the palate a cleft palate is formed.

While it is known that cleft lip and cleft palate are the result of a failure of the tissues to join during the baby's development, the reason why it should happen is not well understood. Sometimes cleft lip and cleft palate can run in families indicating that there is a genetic link, but other times a baby is born with a cleft without anyone else in the family having one.

Other possible reasons are a deficiency of the vitamin folic acid during pregnancy, an infection during pregnancy or the side effects of drugs such as anticonvulsants taken by the mother in the early stages of pregnancy.
Symptoms
About 70% of cases of cleft lip are recognised during a routine ante-natal ultrasound scan. If it is not detected at that time, it will be noticed as soon as the baby is born. If a baby has a cleft palate but not a cleft lip, it is not possible to detect on the ultrasound scan, but it will be picked up when the baby is born.

The symptoms experienced by the baby will depend upon the extent of the cleft lip and cleft palate. Some babies experience difficulty in suckling and so may gain weight slowly. Others may have difficulty breathing. As the child develops, a cleft palate may cause speech difficulties. There may be problems with the development of the teeth and jaw and the child may be prone to ear infections and have hearing problems.
Treatment
Once a diagnosis has been made, it is likely that the baby will be referred to a specialist centre where care and treatment will be provided by a Cleft Lip and Palate Team. This team will be made up of specialists working together to make sure that the best possible treatment is given. The specialists making up a team may include the following:
  • Surgeon
  • Cleft nurse
  • Orthodontist
  • Paediatrician
  • Speech and language therapist
  • Psychologist
  • Geneticist
When is a cleft lip repaired?
A cleft lip is usually surgically repaired by the time a baby is 2-3 months old. The operation requires a general anaesthetic and takes roughly one and a half hours. The surgeon re-arranges the skin and muscles of the lip so no skin-grafting from other parts of the body is needed.

Most babies recover very quickly and will not experience much pain after this operation. Medication is given for any discomfort. The hospital stay for this operation is between 3-5 days. A parent is usually welcome to stay in hospital with the child.

Feeding after the lip operation is not usually a problem. The nurse on the cleft team will be able to answer any questions about feeding.
When is a cleft palate repaired?
The palate is usually repaired by the time a baby is a year old. The tissues of the palate are re-arranged and sometimes extra tissue from other parts of the body is used. The operation is, like the cleft lip repair, carried out under general anaesthetic and takes approximately one and a half hours.

Treatment of cleft lip and palate babies is a long term process and may require a number of operations until the child stops growing.
When to consult your pharmacist
As the exact cause of cleft lip and cleft palate is not known, it is not possible to give any specific advice on how to avoid the problem.

If you are thinking of starting a family, talk to your pharmacist about ways of maintaining a healthy pregnancy. Ensure that you take a folic acid supplement. Although, the exact role of folic acid in cleft lip and cleft palate has not been established, there is evidence that shows that taking folic acid before and during a pregnancy reduces the risks of the child developing spina bifida and it may have a beneficial effect in preventing cleft lip and cleft palate.

Also tell your pharmacist if you are pregnant and need to take anticonvulsants or corticosteroids during your pregnancy.
When to consult your doctor
Talk to your doctor if you are thinking of starting a family and are worried about cleft lip and cleft palate because a close family member has had a child with the condition.

If you suffer from epilepsy and are thinking of starting a family, your doctor will talk to you about the need for you to continue treatment to balance the risk between you and your unborn baby.
Living with a child with a cleft lip or a cleft palate
The majority of parents will learn that their baby has a cleft after having an antenatal scan. The news can come as a shock and it is natural to feel saddened and overwhelmed by the fact. As parents, you may have feelings of guilt and helplessness, blaming yourselves for your unborn baby's condition and wondering what to do next.

You may have heard about cleft lip and cleft palate previously but you will probably not know all of the facts. You may be worried that your baby will also have learning difficulties or have heart problems, but this is highly unlikely. The majority of babies born with a cleft are otherwise perfectly healthy.

Share any concerns that you may have with your Cleft Lip and Palate Team, they are there to provide support to you as well as your baby. They will answer any questions that you have about your baby's condition, will provide help with breast feeding or bottle feeding, and will advise you about the surgical procedures that your baby will need. Moreover, the Cleft Lip and Palate Team will remain available to you, continuing to give advice and support about hearing, speech and dental needs as your child gets older.

Having a new baby is a wonderful experience for any parents. The fact your baby has a cleft lip or cleft palate should not and will not harm that experience. There will be moments of heartache and worry, but these bring a loving family close together. Allow family and friends to help, there will be times when you may need someone to look after other children if you need to take your baby to hospital, or if you simply just need a break. Do not try to battle on alone.

As your child gets older and starts school, help her/him feel comfortable about her/his looks, respond in a positive way to any concerns and be supportive.

Further information
Further information may be obtained from CLAPA - Cleft Lip and Palate Association - the representative organisation for all people with and affected by cleft lip and/or palate in the UK. CLAPA provides support and information to new parents, and works closely with the specialist cleft teams and health professionals to ensure that people receive the best possible care. CLAPA's website has a number of useful publications and information leaflets.

Cleft Lip and Palate Association
1st Floor, Green Man Tower
332B Goswell Road
London
EC1V 7LQ
Tel: 020 7833 4883
email: info@clapa.com
www.clapa.com

Reviewed on 25 October 2010


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