Your baby's upper lip develops at around five weeks of pregnancy. His or her palate (roof of the mouth) develops from around eight to 12 weeks. Normally these tissues grow towards each other and join up in the middle.
If the tissues don't join together, a gap forms in your baby's lip and gum. This is cleft lip and can be a single gap on one side of your baby’s upper lip (unilateral cleft lip) or two gaps, one below each nostril (bilateral cleft lip). If the cleft involves your baby’s entire lip and continues up to the nostril, it’s called a complete cleft lip.
If your baby’s palate doesn’t join up and there is a gap in the roof of your baby's mouth, it’s called a cleft palate. This can happen on its own or with cleft lip. It can affect the hard palate at the front of your baby’s mouth, the soft palate at the back of the mouth, or both.
Each year in the UK, about one baby in 700 is born with a cleft lip, a cleft palate or both.
If your baby has a cleft lip or palate, he or she may have problems feeding. Your baby may take in too much air during feeding, feed slowly or bring up milk through their nose.
With help, if your baby has only got a cleft lip, he or she should be able to breastfeed. You may need to try different positions, press your baby's lips against your breast or close the cleft with your finger so that he or she can latch on properly and suck. Babies with a cleft palate tend to have more difficulty breastfeeding because they can’t create enough suction in their mouths.
If your baby can't breastfeed, or you don't want to breastfeed, you can use a squeezable bottle and a soft teat to help your baby feed. You can use these with expressed breast milk or formula. Babies who find it difficult to feed may gain weight slowly at first. Your nurse specialist will monitor feeding and provide advice and support.
If your child has a cleft lip, he or she will not usually have any speech or language difficulties. However, children with a cleft palate are usually slower to start talking and may find it hard to pronounce some sounds clearly. When this happens, your child will need speech and language therapy.
Most children who have surgery for cleft palate go on to speak normally after speech therapy, although some need more surgery to reduce the air going through their nose. This will usually happen before your child starts school.
Children with a cleft palate are more likely to develop glue ear. This is where sticky fluid builds up behind the eardrum. In children without a cleft palate, this fluid drains away from the ear into the throat through the Eustachian tube. However, the muscles that help open and close the Eustachian tube don’t work properly when your child has a cleft palate. Usually, your child will grow out of the problem. Small tubes called grommets can be inserted to drain your child’s ears if his or her hearing is affecting speech and language development, or sometimes a temporary hearing aid is recommended.
Having a cleft lip and/or palate will affect your child’s teeth. His or her teeth may be missing, or they may come through in abnormal positions, or an extra tooth may develop. Orthodontic treatment will help your child's teeth come through straight and in the right place. The cleft lip and palate makes the teeth at risk of tooth decay and therefore it’s very important that you help your child clean his or her teeth properly.
When your child’s second teeth are coming through and during the early teens, he or she will usually need to wear a brace. Your child may also need to have some teeth removed to stop overcrowding, or have implants to replace missing teeth.
The exact cause of cleft lip and palate is unknown, but it’s thought to be caused by a combination of genetic and environmental factors. Cleft lip and palate can sometimes have a family link. If you have had a child with a cleft lip or palate, you will be offered genetic counselling to find out your risk of having another child with a cleft lip or palate. 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. If you’re pregnant, certain things may increase your risk of having a baby with cleft lip or palate. More research is needed, but they may include:
Sometimes babies develop cleft lip and/or palate in combination with other defects, such as heart problems.
Your routine ultrasound scan at 18 to 20 weeks of pregnancy will usually pick up if your baby has a cleft lip. You will be put in touch with a specialist cleft team and will see someone from the team as soon as possible, usually the nurse and/or the cleft surgeon.
If your baby has a cleft palate, you won’t find out until your baby is born because it doesn’t show up on an ultrasound scan.
Your maternity hospital will refer you to a specialist cleft team, a multidisciplinary team of specialists who will look after your child. The team includes clinical nurse specialists, surgeons, paediatricians (doctors who specialise in children’s health), speech and language therapists, ENT specialist (doctor trained in the surgical and medical treatment of conditions affecting the ears, nose, throat, head and neck), dentists, orthodontists, psychologists and geneticists. The team will put together a care plan. Your child and your family should have advice, care and support from birth until your child reaches his or her late teens.
Surgery makes a large difference to your child's development. Your baby will usually have an operation to close his or her cleft lip around the age of three months. An operation to repair a cleft palate usually happens a bit later, at around six to nine months, but almost always before 12 months. The type of surgery your baby needs will depend on how severe the cleft is. Operations are done under general anaesthesia - this means your baby will be asleep during the operation. Ask your surgeon how long your baby will need to stay in hospital. You will usually be able to stay in the hospital with your baby.
Your child will usually need more surgery later on to improve the appearance of his or her lip and nose, and sometimes the function of the palate.
All women should take a daily supplement of 400 micrograms of folic acid in the month before conception and in the first 12 weeks of pregnancy. This is to reduce the risk of spina bifida, but may also reduce the risk of cleft lip and palate.
A cleft lip is usually (although not always), picked up on a routine ultrasound scan while you are pregnant. A cleft palate is almost always diagnosed after birth.
You will be offered a detailed ultrasound scan at 18 to 20 weeks of pregnancy to check that your baby is developing normally. This is sometimes called an anomaly scan. This scan can usually pick up on certain structural abnormalities, such as spina bifida and cleft lip. About seven out of 10 babies with cleft lip are picked up by routine scans, the rest are detected after birth.
Your ultrasound scan won’t be able to show if your baby has a cleft palate. A cleft palate is usually diagnosed at birth, but it may take longer for clefts that are less clear.
Finding out that your baby has a cleft lip can be a shock at first. However, being told before your baby's birth can give you and your family time to get used to what to expect, and a chance to talk to medical and nursing staff. You will be referred to a specialist cleft and lip palate team, which may not be at the hospital where you’re receiving the rest of your antenatal treatment. Someone from the cleft team will arrange to see you before your baby is born, giving you the chance to ask any questions you may have. You should be offered counselling to help you cope with your feelings and worries about your baby’s cleft lip and/or palate.
Helping other children to understand your child's condition by providing simple explanations can greatly reduce the amount of teasing and name-calling.
A child born with a cleft may be teased or bullied at school because he or she looks or sounds different. Children usually only react to the unknown out of fear and embarrassment, so it's best to deal with this by providing simple explanations of your child's condition.
Try to encourage your child to mix with other children from an early age, so that he or she can learn to handle different situations early on. Children are naturally curious and will often ask direct questions. Give your child a straightforward explanation about his or her condition that he or she can use when asked by friends.
Keep in touch with your child's teachers, and let them know about medical appointments and planned operations, so they can prepare in advance for any changes that are likely to be happening that may affect your child at school. Your child's teacher may also be able to help by explaining his or her condition to other classmates, perhaps at an opportunity when your child is away from school.
In most children there is no direct link between a cleft lip and/or palate and learning difficulties. However, it's possible that your child may experience some difficulties in school.
In almost all cases, cleft lip and/or palate itself has no relation to learning difficulties. Occasionally, children may have a cleft lip and/or palate in combination with other birth defects, which may affect their learning. The doctor will usually be able to recognise this at birth or in the first few months of life.
Most children have only cleft lip and/or palate and so have as much chance as any other child of having other learning or physical problems.
It’s possible, however, that the hearing and speech problems your child may have as a result of his or her cleft lip or palate may make learning at school more difficult.
Hearing problems may reduce your child's attention span and concentration in school, while problems with speech can affect his or her ability to communicate. These factors may hold your child back in class. You will be offered regular hearing checks and monitoring with the speech and language therapist, which can help to prevent this.