Cleft lip and palate
Cleft lip and palate are facial abnormalities which can affect babies at birth. They are common worldwide and can affect the lip, the palate or both. If untreated they can lead to feeding difficulties early on, and psychological difficulties as your child grows up. However, modern treatment begins early in the baby's life, with surgery to correct the defect, and continues as the baby grows. The expert nature of modern surgery means that the health, development and appearance of a baby with cleft lip and palate should not be affected.
What are cleft lip and cleft palate (CLP)?
A cleft is a gap or split. This can be in the upper lip, the roof of the mouth (palate), or sometimes both. In the womb (uterus) a baby's face is formed of several parts coming together, like petals of a flower. CLP occurs when the upper areas of the central face do not quite join together properly, leaving a gap in the palate, the upper lip, or both.
How common is cleft lip and palate (CLP)?
CLP is the most common facial birth defect in the UK. It affects about one in every 700 babies. The type of cleft and its severity vary considerably. It may affect the lip, the palate, or both. Nearly half of all affected children have a cleft palate. Around a quarter have a cleft lip alone and about a quarter have both a cleft lip and palate.
One-sided cleft lip is more common than the two-sided type, which affects only about 1 in 10 children with cleft lip. One-sided clefts are more commonly on the left side.
Who is most often affected by cleft lip and palate (CLP)?
About two thirds of cases occur in babies with no other medical problems. Boys are affected by CLP slightly more often than girls. However, clefts of the palate alone are more common in girls.
CLP is most common in people of Asian and Native American descent. It is least common in people of African ethnicity. The condition is becoming less common.
Can CLP be detected before birth?
Lip clefts may be detected by antenatal scans at around 20 weeks of gestation. However, many are not noticed on these early scans so not all parents are forewarned. Palate defects alone are not usually seen on scan.
What problems can cleft lip and palate (CLP) cause?
As CLP may be very visible, it can be a shock to new parents. Unsurprisingly, CLP can sometimes affect the way a mother initially bonds with her baby.
CLP can also affect early feeding. Babies can usually manage breast-feeding but may struggle with bottle-feeding without help. Normally, when babies feed they breathe through their noses and produce a vacuum in their mouths to suck. When there is a cleft in the palate or lip babies can't make this vacuum. Babies with CLP can also have difficulty breathing and feeding at the same time.
Simple devices are available to help babies with CLP feed before corrective surgery takes place.
Once it is corrected, CLP should not affect a baby's health and welfare. In places where healthcare resources are poor, babies with CLP may fail to feed well. This can affect their health and even their survival. Children with uncorrected CLP may also have considerable problems in later life. This is due to society's lack of acceptance of a facial abnormality and to poor self-image. They may also have problems with speaking and hearing.
Why does cleft lip and palate (CLP) occur?
The exact reason is not known. It is thought to involve a mixture of genetic and environmental factors affecting the baby in the womb (uterus). 'Genetic' means that the condition is passed on through families through special codes inside cells called genes. The failure of development of the upper lip and palate occurs early in pregnancy, between the fifth and ninth weeks.
What are the genetic factors?
If both parents are unaffected but have a baby with a cleft, the chance of the next child being affected is around 1 in 40. If one of the parents has a cleft, the risk of a cleft in their baby is about 1 in 20 for each pregnancy.
What are the environmental factors?
Researchers are still trying to identify the causes. There is a known risk in taking certain types of medicines during pregnancy - for example, phenytoin, isotretinoin, sodium valproate, benzodiazepines and steroid tablets.
Smoking around the time of conception and in the first ten weeks increases the risk.
Alcohol use in the first twelve weeks of pregnancy, particularly binge drinking, also increases the risk.
Researchers are unsure whether a shortage of folic acid, other vitamins, zinc and cholesterol are important.
What are the types of cleft lip and palate (CLP)?
CLP usually involves the upper lip and/or palate. Very rarely other parts of the face are affected.
Cleft lip alone
If the cleft affects the lip only and does not affect the palate is is known as cleft lip. Clefts of the upper lip are 'off-centre' - there may be one or two. There may be a small gap in the lip (complete cleft) with the split running from the point on a 'cupids bow' lip (the philtrum) to the nostril. There may just be an indentation (partial or incomplete cleft). Cleft lip may be just on one side or on both sides of the centre of the upper lip. A partial cleft may be very small.
Cleft palate (with or without cleft lip)
Cleft palate occurs when the two plates in the base of the skull which form the roof of the inside of the mouth (the hard palate) fail to join together The cleft is central in the palate. Most commonly, cleft lip is also present.
A complete cleft palate involves both hard and soft palates.
A partial cleft can affect just the soft palate, forming a hole in the roof of the mouth. The dangly piece of tissue at the back of the throat (the uvula) is usually also split. Submucous cleft palate is a very slight cleft palate which involves only a split uvula, a furrow on the soft palate and a notch on the back of the hard palate. The hole in the roof of the mouth connects the oral cavity to the nasal cavity. As a result, if the hole is not closed, the voice is altered.
What will happen if my baby is born with cleft lip and palate (CLP)?
There may be an obvious gap in the lip. Doctors will examine your baby's mouth to see if there is also a hole in the palate.
Your baby may have difficulty bottle-feeding, although most babies are able to be breast-fed. Special teats and bottles are available to help your baby feed. A further option is to use a dental plate to seal the roof of the mouth.
If babies fail to gain weight at first they usually catch up by the age of 6 months.
Do babies with cleft lip and palate (CLP) have other abnormalities?
Most babies with CLP have no other conditions. However, all babies with CLP are carefully examined by a children's doctor (paediatrician) to look for rare conditions that can be associated with CLP. Your baby may also have chromosome tests (blood tests which can detect some genetic conditions) performed. Rare conditions which can have CLP as a part of a group of symptoms include:
- Apert's syndrome.
- Goldenhar's syndrome.
- DiGeorge's syndrome.
- CHARGE syndrome.
- Pierre Robin syndrome.
- Edwards' syndrome.
- Patau's syndrome.
- Trisomy 15.
- Van der Woude syndrome.
What other problems might cleft lip and palate (CLP) cause?
If CLP is corrected the chances of ongoing problems are small. Psychosocial problems can occur, particularly if CLP is left uncorrected. These include problems with self-image, behaviour, anxiety and depression. There are many charities working in the developed world to correct CLP in babies who might otherwise grow up to experience these difficulties.
How is cleft lip and palate (CLP) managed?
Children with CLP are managed by a multidisciplinary team. This is usually in a specialist CLP centre, of which there are nine in England and Wales, and separate specialist networks in Scotland and Northern Ireland. The team approach includes cosmetic surgeons, craniofacial surgeons, ear, nose and throat surgeons, speech and language therapists, dentists, orthodontists, psychologists and specialist nurses. They provide support and treatment until growing is complete at around the age of 18 years.
What are the surgical options?
Surgery is the main treatment. A series of operations will be required as the child grows.The first lip closure is usually performed at three months after birth. Palate closure is performed at 6-12 months. Further operations are performed to improve appearance and tooth growth.
What may improve in the future?
There is a possibility that surgery in the womb pre-birth (intrauterine surgery) will become more common, which can mean scarless healing.
What other problems might affect a baby with cleft lip and palate (CLP)?
CLP affects the shape of structures around the mouth and nose. This includes the Eustachian tubes and the teeth. As a result, children who have been born with CLP are more likely to experience several conditions which are (in any case) common in unaffected children too. These include glue ear, hearing difficulties and dental problems (caries and misaligned teeth).
What is the long-term outlook for children with cleft lip and palate (CLP)?
Your baby should achieve a normal appearance, normal speech and eating habits very early in the process.
Can cleft lip and palate (CLP) be prevented?
Until the causes are absolutely understood, this remains unclear. Pre-pregnancy planning seems to reduce risk, involving good diet and avoidance of alcohol, cigarettes and certain medicines. Research continues into other things which may affect the risk.
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