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Cleft lip and palate

Published by Bupa's health information team, June 2009.

This factsheet is for parents of children with a cleft lip and palate, or anyone who would like information about it.

Cleft lip and palate is a gap or split in the upper lip or roof of the mouth, or both. It happens when a baby's lip and roof of the mouth don't join properly during pregnancy.

About cleft lip and palate
Problems related to cleft lip and palate
Causes of cleft lip and palate
Diagnosis of cleft lip and palate
Treatment of cleft lip and palate
Prevention of cleft lip and palate
Questions and answers
Related topics
Further information
Sources

About cleft lip and palate

Your baby's upper lip develops at around five weeks of pregnancy, and from around eight to 12 weeks, the palate (the roof of his or her mouth) develops from tissue on either side of the tongue. Normally these tissues grow towards each other and join up in the middle.

When the tissues don't join up in the middle, a gap forms in your baby's lip and gum. Usually this will be a single gap below a nostril (unilateral cleft lip). Sometimes there are two gaps in the upper lip, each below a nostril (bilateral cleft lip). When the palate fails to join up, a gap is left in the roof of your baby's mouth.

Almost half of clefts involve both the lip and palate. About a third are of the lip alone and a quarter are of the palate alone. The severity of the defect can vary. Each year in the UK, about one baby in 600 is born with a cleft lip, a cleft palate or both.

Problems related to cleft lip and palate

Feeding

Newborn babies with cleft lip can usually breastfeed. If you're trying to breastfeed a baby with cleft lip, you may need to try different positions and press your baby's lips against your breast so that he or she can latch on properly. Babies with a cleft palate may have more difficulty breastfeeding because they cannot create a vacuum in their mouths. They may take in too much air during feeding, feed slowly or bring up milk through their noses.

If your baby can't breastfeed, or you don't want to breastfeed, special bottles and teats are available for babies with clefts. You can use these with formula or expressed breast milk.

Babies who find it difficult to feed may gain weight slowly at first. A specialist cleft nurse can advise you about changing the type of formula milk and other feeding issues.

Speech

Children with cleft lip and gum usually develop speech normally. However, if your child has had surgery to repair a cleft palate, he or she may find it harder to pronounce some sounds clearly. Most children who have had surgery for cleft palate go on to speak normally after speech therapy, although some need more surgery to reduce the amount of air going through their nose.

Children with clefts may have nasal-sounding speech.

Hearing

Your child is more likely to have hearing problems if he or she has a cleft lip and palate. This is because children with a cleft are more likely to develop glue ear - a condition in which sticky fluid builds up behind the eardrum. Usually, this fluid can drain away in the eustachian tube - the tube that connects the ear and the throat. However, this tube can become distorted by a cleft palate. As part of surgery to repair a cleft palate, surgeons often put a tiny plastic tube (a grommet) into the eardrum so that the fluid can drain out.

Teeth and jaws

If the cleft affects your child's gum, it can affect the development of his or her teeth. Teeth near the cleft may be missing, or they may come through at different angles to normal. Sometimes there are extra teeth. There may also be problems with the growth of your child's jaw.

Almost all children with cleft lip and palate need to have orthodontic treatment to help their teeth come through straight and in the right place. This usually involves wearing a brace when the second teeth are coming through and during the early teens. Your child may also need to have some teeth removed to prevent overcrowding, or have implants to replace missing teeth.

Causes of cleft lip and palate

Cleft lip and palate are usually caused by a combination of genetic and other factors. Sometimes clefts run in the family. Cleft lip alone and cleft lip and palate are more common in boys. Cleft palate alone is more common in girls.

Doctors can't reliably predict which pregnancies will be affected. But if you are pregnant, the following may increase your risk of having a baby with cleft lip or palate:

having an infection
smoking or drinking alcohol
not having enough folic acid
taking certain medicines, including some anti-epilepsy medicines, steroids and benzodiazepines for insomnia or anxiety (you should talk to your doctor before trying for a baby if you're taking these medicines)

Occasionally, babies may develop cleft lip or palate in combination with other defects.

Diagnosis of cleft lip and palate

If your baby has a cleft lip, it will usually be picked up at the routine ultrasound scan at 18-20 weeks of pregnancy. If the scan reveals that your baby has a cleft lip, you will be put in touch with a specialist cleft lip and palate team at a hospital designated for cleft treatment. Someone from the team will arrange to see you before your baby is born, giving you a chance to ask any questions you may have.

A cleft palate will usually only be noticed when your baby is born, as it does not show up on an ultrasound scan.

Treatment of cleft lip and palate

Specialist centres

If your baby is born with cleft lip or palate, your maternity hospital will refer you to a specialist centre, where a multidisciplinary team of healthcare professionals who routinely work in this field will look after your child. The team may include specialist cleft nurses, surgeons, speech and language therapists, audiologists (hearing experts), dentists, orthodontists, psychologists and geneticists. The team will put together a plan of care and will monitor your child's growth and development as he or she grows up. Your child and your family should have advice, care and support from birth until your child stops growing, at about age 18.

Surgery

Surgery can make a big difference to you child's ability to grow and develop normally. Your baby will usually have an operation to close his or her cleft lip before the age of three months' old. An operation to repair a cleft palate usually happens a bit later - but before the age of one year. The types of surgery your child needs will depend on how severe the cleft is. Both operations are done under general anaesthesia. This means your baby will be asleep during the operation. Your baby will need to stay in hospital for three to five days after the operation. You will usually be able to stay in the hospital with your baby.

Your child might need more surgery later on to improve the appearance of his or her lip and nose and the function of his/her palate. If there is a gap in your child's gum, he or she will usually have a bone graft at age nine or 10. This will help your child's second teeth to anchor properly into the gum.

Prevention of cleft lip and palate

If you have had a child with a cleft lip or palate, the chance of any more children you have being affected may be slightly increased. You may be offered genetic counselling to find out your chance of having another child with a cleft lip or palate. However, in most cases the most sensible approach is simply to aim to have a healthy pregnancy.

Taking a daily supplement of 400 micrograms of folic acid in the month before conception and in the first two months of pregnancy can help prevent cleft lip. This is the same amount of folic acid recommended to reduce the risk of neural tube defects such as spina bifida.