Cleft palate: causes, treatment and what to expect

A cleft lip or palate happens when the structures that form the upper lip or palate fail to join together while a baby is developing in the womb. The NHS says the exact reason why this happens to some babies is often unclear, and it is very unlikely to have been caused by anything you did or did not do during pregnancy.

In a few cases the NHS says a cleft is associated with the genes a child inherits from their parents (although most cases are a one-off), smoking or drinking alcohol in pregnancy, obesity in pregnancy, a lack of folic acid in pregnancy, or taking certain medicines in early pregnancy, such as some anti-seizure medicines. If you take regular medicines and are planning a pregnancy, talk to your GP or specialist before you stop or change anything.

A cleft palate can also occur as part of a condition that causes a wider range of birth defects. The NHS gives 22q11 deletion syndrome (sometimes called DiGeorge or velocardiofacial syndrome) and Pierre Robin sequence as examples.

The palate is the roof of the mouth. In a cleft palate there is a gap or split in it, present from birth. The NHS says a cleft palate may just be an opening at the back of the mouth, or it may be a split that runs all the way to the front of the mouth. Sometimes it can be hidden by the lining of the roof of the mouth.

Babies can be born with a cleft lip, a cleft palate, or both. A cleft lip may affect one side of the lip or there may be two clefts, and it can range from a small notch to a wide gap that reaches the nose.

The NHS says a cleft can cause a number of issues, particularly in the first few months after birth and before surgery. Most of these problems improve after surgery and with treatments such as speech and language therapy.

• Feeding difficulty: a baby may be unable to breastfeed or feed from a normal bottle because they cannot form a good seal with their mouth. They may take in a lot of air, milk may come out of the nose, and they may struggle to put on weight in the first few months.

• Hearing problems: babies with a cleft palate are more vulnerable to ear infections and a build-up of fluid in the ears (glue ear), which may affect hearing.

• Dental problems: teeth may not develop correctly and there is a higher risk of tooth decay. If a cleft involves the gum area, teeth on either side may be tilted or out of position, and a tooth may be missing or there may be an extra one.

• Speech problems: if a cleft palate is not repaired, it can lead to unclear or nasal-sounding speech when a child is older.

A cleft lip is usually picked up during the 20-week screening scan, done when you are between 18 and 21 weeks pregnant. Not all cleft lips are obvious on this scan, and the NHS says it is very difficult to detect a cleft palate on an ultrasound scan.

If a cleft lip or palate does not show up on the scan, it is usually diagnosed immediately after birth or during the newborn physical examination done within 72 hours of birth. Once it is diagnosed, you are referred to a specialist NHS cleft team who explain your child's condition, discuss the treatments they need and answer your questions.

The NHS also says that your cleft team will pass information about your child to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) to help scientists find better ways to prevent and treat the condition. You can opt out of the register at any time.

Cleft lip and cleft palate are treated at specialist NHS cleft centres. Your child will usually have a long-term care plan that outlines the treatments and assessments they will need as they grow up. The NHS says a cleft is usually treated with surgery, and that other treatments such as speech therapy and dental care may also be needed.

Palate repair is usually done when a baby is 6 to 12 months old. The gap in the roof of the mouth is closed and the muscles and the lining of the palate are rearranged, with dissolvable stitches. The NHS says the operation usually takes about 2 hours under general anaesthetic, most children are in hospital for 1 to 3 days, and arrangements may be made for you to stay with them. The scar is inside the mouth.

Further surgery may sometimes be needed later: a bone graft to repair a cleft in the gum (usually at around 8 to 12 years), surgery to improve the appearance and function of the lips and palate if the original surgery did not heal well or there are ongoing speech problems, rhinoplasty to improve the shape of the nose, or surgery for a small or set-back lower jaw. A small number of children who still have nasal-sounding speech after repair may need further corrective surgery.

Many babies with a cleft palate have problems breastfeeding because of the gap in the roof of the mouth. A specialist cleft nurse can advise on positioning, alternative feeding methods and weaning if necessary. If breastfeeding is not possible, the NHS says they may suggest expressing breast milk into a flexible bottle that is designed for babies with a cleft palate.

Very occasionally it may be necessary for a baby to be fed through a tube placed into their nose until surgery is carried out. If you are worried that your baby is not feeding well or not gaining weight, tell your cleft nurse, midwife or health visitor.

Hearing: children with a cleft palate are more likely to develop glue ear, so they have regular hearing tests. The NHS says hearing problems may improve after palate repair and, if necessary, can be treated with tiny plastic tubes called grommets, which let the fluid drain from the ear. Sometimes hearing aids are recommended.

Speech: repairing a cleft palate significantly reduces the chance of speech problems, but some children with a repaired palate still need speech therapy. A speech and language therapist assesses speech several times as a child grows, may refer to community services near home, and monitors speech until the child is fully grown.

Teeth: a paediatric dentist monitors the health of the teeth, and you should register your child with a family dentist. Children with a cleft are more vulnerable to tooth decay, so good oral hygiene and regular dental visits matter. Braces or other orthodontic appliances usually start after all the baby teeth have been lost, but may be needed before a bone graft to repair the gum.

The NHS says the majority of children treated for a cleft lip or palate grow up to have completely normal lives. Treatment can usually improve the appearance of the face and problems with feeding and speech.

Children attend regular outpatient appointments at a cleft centre so their condition can be monitored closely. The NHS says these are usually recommended until they are around 21 years of age, when they are likely to have stopped growing.

The NHS says surgery to repair a cleft lip may leave a small pink scar above the lip, which fades over time and becomes less noticeable as a child gets older.

Cleft care in the UK is delivered through specialist NHS cleft centres, and a referral to the team follows the diagnosis at the scan, birth or newborn examination. The NHS lists specialist centres across England, Wales, Scotland and Northern Ireland, and the cleft team plans surgery, feeding, hearing, speech and dental care in one long-term plan.

Some families also choose to see private dentists, orthodontists or speech and language therapists alongside NHS care. If you do, it helps to let the cleft team know so that assessments and treatment stay joined up.

Contact your cleft nurse or cleft team if your baby has trouble feeding, is not gaining weight, seems not to hear well, or if speech is not developing as expected. These are among the issues the NHS says a cleft can cause, and the team can adjust the plan.

As with any baby, if your baby seems seriously unwell or is having difficulty breathing, call 999 or NHS 111 rather than waiting for a routine appointment.