Cleft lip and palate: causes, treatment and what to expect

During early development in the womb, parts of the face grow towards each other and join. If that does not fully happen, a gap is left. The NHS describes a cleft as a gap or split in the upper lip and/or the roof of the mouth (the palate). It is present from birth.

A cleft lip can affect one side of the lip or both sides, and ranges from a small notch to a wide gap that reaches the nose. A cleft palate may be only an opening at the back of the mouth, or a split that runs all the way to the front. The NHS adds that sometimes a cleft palate can be hidden by the lining of the roof of the mouth.

Children with a cleft lip or palate need several treatments and assessments as they grow up. The NHS says a cleft is usually treated with surgery, and other treatments such as speech therapy and dental care may also be needed. Care is given by a specialist cleft team at an NHS cleft centre, and each child has a care plan tailored to their needs.

Lip repair is usually done when a baby is around 3 months old, under a general anaesthetic. The NHS says the operation usually takes 1 to 2 hours, most babies stay in hospital for 1 to 2 days, and arrangements may be made for a parent to stay. The surgeon will try to line up the scar with the natural lines of the lip so it is less noticeable, and the NHS says it should fade over time.

Palate repair is usually done at 6 to 12 months. The gap in the roof of the mouth is closed and the muscles and lining are rearranged, using dissolvable stitches. The NHS says it usually takes about 2 hours, most children are in hospital for 1 to 3 days, and the scar is inside the mouth.

Some children need more surgery later. The NHS gives examples: a bone graft to repair a cleft in the gum (usually at around 8 to 12 years), operations to improve the appearance and function of the lips and palate, rhinoplasty to improve the shape of the nose, and surgery to improve the appearance of the jaw.

The NHS says a cleft happens when the structures that form the upper lip or palate fail to join together as a baby develops in the womb. 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 following:

• The genes a child inherits from their parents (although most cases are a one-off).

• Smoking or drinking alcohol in pregnancy.

• Obesity during pregnancy.

• A lack of folic acid during pregnancy.

• Taking certain medicines in early pregnancy, such as some anti-seizure medicines.

Sometimes. The NHS says a cleft lip or palate can occur as part of a condition that causes a wider range of birth defects, such as 22q11 deletion syndrome (also called DiGeorge or velocardiofacial syndrome) and Pierre Robin sequence. It also says most affected children will not have any other serious medical problems. If your baby has a syndrome, the cleft team and paediatricians will plan their care together.

The NHS says 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 will be obvious on this scan, and it is very difficult to detect a cleft palate on an ultrasound scan.

If it does not show up on the scan, a cleft lip or palate is usually diagnosed immediately after birth or during the newborn physical examination done within 72 hours of birth. Once it is diagnosed you will be referred to a specialist NHS cleft team, who explain the condition, discuss the treatments needed and answer questions. The NHS also suggests contacting a support group such as the Cleft Lip and Palate Association (CLAPA).

A cleft can cause problems in the first months before surgery. The NHS says a baby may be unable to breastfeed or feed from a normal bottle because they cannot form a good seal with their mouth. Many babies with a cleft palate take in a lot of air, may have milk come out of their nose and may struggle to put on weight during their first few months.

A specialist cleft nurse can advise on positioning, alternative feeding methods and weaning if needed. If breastfeeding is not possible, they may suggest expressing breast milk into a flexible bottle designed for babies with a cleft palate. The NHS says very occasionally a baby needs to be fed through a tube into the nose until surgery.

Hearing: children with a cleft palate are more likely to develop glue ear, where fluid builds up in the ear and may reduce hearing. The NHS says they have regular hearing tests. Hearing may improve after palate repair, and if needed small tubes called grommets can be placed in the eardrums to drain the fluid, or hearing aids may be 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 the child grows, and the NHS says they continue monitoring until the child is fully grown. A small number of children need further corrective surgery if too much air escapes through the nose when speaking, causing nasal-sounding speech.

Teeth: if a cleft involves the gum, teeth on either side may be tilted or out of position, and a tooth may be missing or extra. A paediatric dentist monitors teeth, and orthodontic treatment such as braces usually starts after all the baby teeth have been lost. The NHS says children with a cleft are more vulnerable to tooth decay, so it is important to practise good oral hygiene and visit the dentist regularly.

The NHS says the majority of children treated for 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. A lip repair may leave a small pink scar above the lip that fades over time and becomes less noticeable as the child grows.

Children are usually seen at the cleft centre for regular outpatient appointments until around 21 years of age, when they are likely to have stopped growing.

The NHS says most cases are a one-off. The risk of having a child with a cleft is slightly increased if you have had a child with the condition before, but the chances are thought to be around 2 to 8%. The same figure applies if either you or your partner was born with a cleft. The chance can be higher where the cleft is part of a genetic condition: for example, a parent with 22q11 deletion syndrome has a 1 in 2 chance of passing the condition to their child.

Because folic acid, smoking, alcohol and some medicines are listed by the NHS as associated factors, it is sensible to talk to your GP or midwife before or early in pregnancy if you take regular medicines such as anti-seizure drugs. Do not stop a prescribed medicine without advice.

The NHS pages on cleft lip and palate do not list emergency signs, so use the general rules for any baby: if your baby is struggling to breathe, is limp or unresponsive, or you are seriously worried, call 999. For feeding difficulties, poor weight gain, ear or hearing concerns, or worries about a scar or stitches, contact your cleft team or specialist cleft nurse, who the NHS says can give advice on feeding, or your GP, midwife or health visitor.

On the NHS, babies with a cleft are treated at one of the specialist cleft centres across England, Wales, Scotland and Northern Ireland, with a long-term care plan covering surgery, feeding, hearing, speech and dental care. Referral follows diagnosis at the scan or newborn examination.

Because treatment involves a coordinated team over many years, some families ask about private opinions. If you do, ask how the private team will work with your NHS cleft centre so that records, hearing and speech follow-up stay joined up. The CLAPA charity supports the UK cleft community at every stage of life, including adults born with a cleft.