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Cleft lip and palatePublished by Bupa's health information team, healthinfo@bupa.com, July 2007. This factsheet is for parents who have a child with a cleft lip and palate, or anyone who would like information about it. Each year in the UK, about 1 in 700 babies are born with a cleft lip (a gap or split in the upper lip), a cleft palate (a gap in the roof of the mouth) or both.
What is cleft lip and palate?At around six weeks of pregnancy, your baby's upper lip and palate develop from tissue lying on either side of the tongue. Normally these tissues grow towards each other and join up in the middle. When the tissues that form the upper lip fail to join up in the middle, a gap forms in the lip. Usually, there 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 the mouth, going up into the nose. About half of all clefts involve both the lip and palate. About 2 in 10 are of the lip alone and 3 in 10 are of the palate alone. Of clefts that involve the lip, 8 in 10 are unilateral and 2 in 10 are bilateral. SymptomsFeedingMost babies with a cleft lip can be breastfed. However, some babies have difficulty creating a seal around the nipple and may not be able to breastfeed. A special squeezy bottle can be used for feeding and can help if the baby can't suck hard enough. These bottles are provided by specialist cleft nurses and are also available from the support charity CLAPA (see Further Information). Babies who find it difficult to feed may gain weight slowly at first. A specialist cleft nurse can give advice about changing the type of formula milk and other feeding issues. SpeechCleft palate can cause problems with speech. The size of the cleft is not an indicator of how serious speech problems are likely to be - even a small cleft can affect speech. Most children go on to speak normally after some speech therapy, although sometimes further surgery will be needed to improve palate function. Children with clefts can sometimes have nasal sounding speech. HearingChildren with clefts sometimes have hearing problems. This is because the tube that connects the ear to the palate (the Eustachian tube) can be affected. Having a cleft can increase the chance of developing a condition known as glue ear. This is quite a common condition in all children and occurs when thick, sticky fluid builds up behind the eardrum. It can cause temporary hearing loss. 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. TeethOccasionally, a cleft palate may also affect the growth of you child's jaw and the development of the teeth. Looking after teeth well and having regular care from a dentist or orthodontist can minimise problems. Your child may need to have extensive orthodontic treatment to make sure the teeth come through straight and in the right place. This may involve wearing braces, especially around the time the second teeth are coming through and during the early teens. Your child may also need to have some teeth removed to prevent overcrowding. CausesThere are many factors that hinder the joining up process of the lip or palate during a baby's development. If you have had a child with a cleft lip or palate, your chance of future children being affected is increased. However, doctors can't reliably predict which pregnancies will be affected because cleft lip and palate is usually caused by a combination of genetic and other unknown factors. The unknown factors may include an illness during pregnancy or being exposed to certain substances such as tobacco smoke or certain medicines. (see Prevention). TreatmentSpecialist centresIdeally, children with cleft lip and palate should be treated by a multidisciplinary specialist "cleft team" that may include surgeons, speech and language therapists, audiologists (hearing experts), dentists, orthodontists, psychologists, geneticists and specialist cleft nurses. Care and support of your child and the family should last from birth until your child stops growing at about age 18. There are about 10 specialist centres in the UK that have established this type of multidisciplinary team. Experts agree that the surgery and care afterwards should only be undertaken by professionals who routinely work in this field. If you have a baby born with a cleft lip or palate, your maternity hospital should refer you to one of these specialist centres. Often they have specialist nurses who can visit you to provide immediate support and advice. This can be invaluable in the early days. SurgeryThe timing of surgery varies, but usually an operation to close the gap in the lip will be done about three months after the baby is born. Surgery to close the gap in the palate is usually done at about six months. Both operations are done while your baby asleep under general anaesthetic and involve a hospital stay of 3 to 5 days. As your child grows older, further surgery may be needed to improve the appearance of the lip and nose and the function of the palate. If there is a gap in the gum, a bone graft will normally be done when your child is between 9 and 12 years old. This will help their second teeth to anchor properly into the gum. Bone is usually taken from the hip or shin and grafted into the gap in the gum. PreventionIf you have had a child with a cleft lip or palate, you may be offered genetic counselling to find out the chances of your next child being affected. However, in most cases the most sensible approach is simply to aim to have a healthy pregnancy. Smoking and drinking alcohol have been shown to increase the risk of babies being affected, and can cause other birth defects. Research has shown that 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 supplement recommended to reduce the risk of neural tube defects such as spina bifida. It's thought that certain medicines may slightly increase the risk of cleft lip and palate. These include anti-epilepsy medicines such as phenytoin (eg Epanutin) and sodium valproate (eg Epilim). Steroid tablets and a medicine called methotrexate (eg Metoject) that is used to treat some cancers and inflammatory conditions, such as rheumatoid arthritis, may also increase the risk. If you are on these medicines, you should discuss the benefits and possible risks with your doctor before trying for a baby. Help and supportIf you are a new parent of a child who has a cleft lip or palate, or a child who was born with a cleft, a specialist psychologist working in the cleft team can help you cope with some of the challenges you may have to deal with. It can also help to get support from other people who have had have had similar experiences, either as parents, or as someone who has grown up with a cleft (see Further information). Further information
Sources
Related topicsThis information was published by Bupa's health information team and is based on reputable sources of medical evidence. It has been peer reviewed by Bupa doctors. The content is intended for general information only and does not replace the need for personal advice from a qualified health professional. Publication date: July 2007. Expected review date: July 2009.
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