Guidance

Cleft lip: information for parents

Updated 27 August 2021

You are reading this information because your baby is suspected of having a cleft lip following your 20-week screening scan.

This information helps you and your healthcare professionals to talk through the next stages of your and your baby’s care. This information should support, but not replace, discussions you have with healthcare professionals.

Finding out that your baby may not be developing as expected can be difficult. It is important to remember you are not alone.

We will refer you to a specialist team who will:

• provide more information about your baby’s condition and treatment
• talk through any questions you may have
• help you plan the next steps

About cleft lip

A cleft lip is a gap or split in the upper lip. A cleft palate is a gap or split in the roof of the mouth.

In early pregnancy, different parts of a baby’s face develop separately and then join together. If some parts do not join properly, the baby is born with a cleft.

Babies can be born with a cleft lip, a cleft palate, or both. This condition is varied, and some clefts need more treatment and support than others.

Most scans only pick up a cleft lip. Scans cannot always find a cleft palate, even if a cleft lip can be seen.

A cleft lip is when the baby’s top lip has not joined together. A cleft lip can:

• be on one side of the lip (unilateral)
• be on both sides of the lip (bilateral)
• range from a small notch to a wide gap that reaches the nose

A cleft palate is where the roof of the mouth (the palate) has not joined together. A cleft palate can be a gap:

• at the back of the palate only
• in the palate that runs all the way to the front of the mouth

Causes

We do not know exactly what causes cleft lip. It’s very unlikely to have been caused by anything you did or did not do during pregnancy. It is sometimes linked to other medical conditions, like those affecting your baby’s chromosomes (genetic information). You will be able to discuss your individual circumstances with a specialist team.

Cleft lip, with or without cleft palate, happens in about one baby out of every 1,300 (0.08%). It is the most common facial birth condition in the UK.

How we find cleft lip

We screen for cleft lip at the 20-week screening scan (between 18⁺⁰ and 20⁺⁶ weeks of pregnancy). Most cases of cleft lip are found during this scan, but very subtle or small cleft lips may not be seen.

It is difficult to find cleft palate on a routine ultrasound scan, even if cleft lip is seen.

Follow-up tests and appointments

As the result of the scan suggests your baby has a cleft lip, we will refer you to a specialist team of experts in caring for pregnant mothers and their babies before they are born. They may be based at the hospital where you are currently receiving antenatal care, or in a different hospital.

The specialist team will offer you more scans, which will confirm if your baby has a cleft lip, the type of cleft lip and what this might mean. They may also offer you extra tests, such as chorionic villus sampling (CVS) or amniocentesis.

It may be useful to write down any questions that you want to ask before you see the specialist team.

If it is confirmed that your baby has a cleft lip, you will be referred to a clinical nurse specialist based within a cleft team. The clinical nurse specialist will support and talk to you about your baby’s condition, the possible complications, treatment and how you can prepare for your baby’s birth.

Treatment

The clinical nurse specialist looking after you and your baby will be part of a cleft team which includes specialists such as cleft surgeons, speech and language therapists, orthodontists and other healthcare professionals, who will care for your baby.

Babies with cleft lip need at least one operation after they are born. This is to reconstruct the shape of the lip and nose and usually takes place when the baby is less than one year old.

The Cleft Lip and Palate Association (CLAPA) has a photo gallery with pictures of cleft lip before and after surgery.

Some babies with cleft lip will also need other treatments such as:

• support with feeding
• monitoring of hearing
• speech and language therapy
• dental and orthodontic treatment (to help with the appearance and placement of teeth)

Babies with cleft lip will have a long-term care plan to support them as they grow.

Longer term care

Cleft lip is a wide and varied condition. It can be straightforward to treat but can be complicated (and more serious) if there are other health issues as well. The specialist cleft team will support you whatever the situation.

Most babies born with cleft lip respond well to treatment and do not have any other serious medical conditions. Treatment is available to address concerns with difficulties in feeding, speech and language development and the appearance of the face.

Surgery to repair a cleft lip may leave a pink scar above the baby’s lip. This will fade over time and become less noticeable as they get older.

The specialist cleft team looking after your baby will:

• talk through any questions you may have
• help you plan the next steps

The specialist cleft team will support your baby as they get older and carry out further treatment if needed. This will depend on the type of cleft lip your baby has.

Next steps and choices

If it is confirmed that your baby has a cleft lip, you can talk to the specialist team caring for you during your pregnancy about your baby’s condition and what this might mean. The team will provide you with as much information as possible so you can make a personal informed choice about your pregnancy options. These include either continuing with your pregnancy or ending your pregnancy.

You might want to learn more about cleft lip. It can be helpful to speak to a support organisation with experience of helping parents in this situation.

If you decide to continue with your pregnancy, the specialist team will help you:

• plan your care and the birth of your baby
• prepare to take your baby home

If you decide to end your pregnancy, you will be given information about what this involves and how you will be supported. You should be offered a choice of where and how to end your pregnancy and be given support that is individual to you and your family.

Only you know what the best decision for you and your family is. Whatever decision you make, your healthcare professionals will support you.

Future pregnancies

In most cases, if you choose to have another baby, they are unlikely to have a cleft lip.

However, there is around a 2 in 100 (2%) to 8 in 100 (8%) chance of this happening again if:

• you or your partner were born with a cleft lip or
• you have had another child with this condition

More information

Antenatal Results and Choices (ARC) is a national charity that supports people making decisions about screening and diagnosis and whether or not to continue a pregnancy.

Cleft Lip and Palate Association (CLAPA) is a national charity working to support people born with a cleft and their families in the UK.

NHS.UK has a complete guide to the conditions, symptoms and treatments, including what to do and when to get help.

Information for parents who are offered a chorionic villus sampling (CVS) or amniocentesis diagnostic test is available.