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Cleft lip and palate

Information about cleft lip and palate, as well as guidance about what support is available from Changing Faces and other organisations.

What is cleft lip and/or palate?

A cleft is a gap or split in the upper lip or roof of the mouth (palate) which is present from birth. It occurs because the affected part or parts did not join together fully during the baby’s development in the womb. It is known as a craniofacial condition, meaning it is to do with the skull or face.

Cleft lip and/or palate affects one in 700 babies. Between 2010 and 2020, 10,765 babies were registered as having been born with cleft lip and/or palate in the UK. Of those with the condition, 45% have a cleft palate only, 24% a cleft lip only and 31% have both.

If you have a long-term or permanent scar as a result of being born with a cleft lip and/or palate, you may experience challenges in your day-to-day life. On this page, we look how a cleft may impact your life and the support available to help you overcome the difficulties you may experience.

I really don’t know if I would be the person I am today without Changing Faces. Meeting other people with visible differences that have been through what I have has been amazing. They understand. I’m not on my own. It’s like a weight had been lifted.

Marcus, Changing Faces young media champion who has a facial cleft

Signs and symptoms

Cleft lip and/or palate is usually picked up before birth. If not, it will be detected shortly after the baby is born.

Cleft lip can vary from a small notch to a gap which reaches the nose. Cleft palate may be hidden by the lining of the roof of the mouth.

A cleft may lead to other problems later on. Babies born with a cleft will be referred straight away to an NHS cleft team, and will be closely monitored to pick up these problems as soon as possible:

  • Difficulty in feeding because the baby cannot easily form a seal with its lips.
  • Ear infections and “glue ear” (where the empty middle part of the ear canal fills up with fluid). These problems can cause hearing problems if not treated.
  • Dental problems because of the way cleft lip and/or palate affects the development of the teeth.
  • Speech problems.

Causes of the condition

Usually, the lip and palate join together as the baby grows in the womb. However, sometimes this doesn’t happen and the baby is born with a cleft lip, cleft palate or both.

It is unlikely to be caused by anything the mother or parents have done. However, some factors may play a role. These include:

  • Smoking or alcohol consumption during pregnancy.
  • Obesity during pregnancy.
  • Lack of folic acid during pregnancy.
  • Certain medications taken during pregnancy, such as anti-seizure medication or steroid tablets.

Is cleft lip and/or palate genetic?

In 15% of cases, the cleft occurs as part of a syndrome (a collection of symptoms which include cleft lip and/or palate). Some syndromes are passed on genetically. The likelihood of passing on a cleft lip and/or palate depends on the syndrome.

Where the cleft is not caused by a syndrome, there is a 2-8% chance that someone with a cleft will pass it onto their child. If their own parents are affected as well, the probability goes up to 10-20%.

Siblings of a person with a cleft have a 1% chance of passing it on to their own children. This may be higher if other family-members are also affected.

Types of cleft lip and/or palate

Cleft lip

A cleft lip may be:

  • Unilateral: Affecting one side of the lip.
  • Bilateral: Affecting both sides.
  • Complete: Stretching up into the nose.
  • Incomplete: Does not reach the nose.

Cleft palate

A cleft palate may affect the hard or soft palate. The hard palate is the area closer to the front of the mouth, the soft is further towards the back.

  • How is cleft lip and/or palate diagnosed?
  • Cleft lip and/or palate is usually diagnosed before birth during the mid-pregnancy anomaly scan done between the 18th and 21st weeks. Most cases (85%) are diagnosed this way.

If the condition is not picked up at this stage, it will be diagnosed straight after birth or during the newborn physical examination which takes place within 72 hours of birth.

Real stories about cleft lip and palate

Treatments for cleft lip and/or palate

Once the baby is diagnosed, they will be referred to a specialist NHS cleft team, where treatment is provided as part of a long-term care plan.

The main treatments include:

  • Surgery. For cleft lip, this usually takes place within the first three to six months. For cleft palate, it usually happens between six and 12 months.
  • Support to make sure the baby can feed properly.
  • Monitoring of hearing, so that any hearing problems are picked up as early as possible.
  • Speech and language therapy if the child struggles with speech.
  • Dental hygiene and possible orthodontic treatment to make sure adult teeth come through properly.

Some patients don’t know that NHS treatment is often available for adults who have previously been discharged from the NHS but need further treatment later on. This may include dental treatment. Talk to your GP about the options available on the NHS before seeking private treatment.

Cleft lip and/or palate and my appearance

A cleft lip and/or palate – particularly a cleft lip – can have a long-term impact on your appearance. Surgery may leave a scar where the skin was stitched together above the lip. This will fade over time but may remain visible for many years or even for life. A cleft lip and/or palate may also affect the shape of the face.

If you were born with a cleft lip and/or palate, you may feel self-conscious throughout your childhood, adolescence and into adulthood. You may be aware of others staring at you and this may make you uncomfortable. It can be particularly difficult if people ask questions or make comments about your appearance. This can affect your self-confidence and have an impact on your mental health.

Cleft lip and palate is one of the most common facial differences there is – around one in 700 people are born with one – but it still seems to be misunderstood and underrepresented in general society. I had a rough time with appearance-related bullying when I was at school, and even now still have some horrible incidents of street harassment as an adult.

Rhona, Changing Faces ambassador who has a cleft lip and palate

What cleft lip and/or palate support can we offer?

If you are struggling with the social, emotional and/or psychological impacts of a cleft, support services are available to help you.

Here at Changing Faces, our trained wellbeing practitioners can offer one-to-one counselling and wellbeing support. We also recommend having a look at our self-help resources, which guide you through different aspects of life with a visible difference – from coping with other people’s reactions to managing your self-esteem and mental health, as well as offering practical tips on other areas of your life.

You shouldn’t feel the need to alter your appearance to fit in with society’s expectations. However, if you decide that the best option for you is to reduce your visible difference, we offer a Skin Camouflage Service which may be able to reduce the appearance of scarring from surgery. Our practitioners use creams and powders to match the affected area to the surrounding skin.

There are a number of other ways we can support people with cleft lip and palate here at Changing Faces:

  • Online Community: Talk to others affected by a cleft and other visible differences in our online moderated forum managed by Changing Faces staff.
  • Peer Group Chat Service: Speak with up to eight other participants with visible differences on a Zoom call or chatroom facilitated by Changing Faces staff.
  • Workshops for children and young people and their parents: An opportunity to meet others and learn tools, tips and techniques for managing challenges with your visible difference.
  • Real stories: Read stories by other people living with cleft lip and/or palate.

Please contact our Support and Information Line if you would like to access our services. Our team can also offer a space for you to discuss the impact of cleft lip and/or palate on your life.

Other organisations

Guidance, support and advice is also available from other organisations. Please follow the links to their websites to learn more.

CLAPA logo

Cleft Lip and Palate Association (CLAPA)

CLAPA supports people born with a cleft and their families. They connect people affected by cleft through online forums and events, offer community-led information and stories on their website, and provide subsidised feeding equipment for babies born with a cleft.

Outlook logo

Outlook

A national, highly specialist psychological service based at North Bristol NHS Trust, supporting adults (16+) with appearance-related distress. They can provide face-to-face and remote support via NHS Attend AnyWhere. Please speak to your GP or healthcare professional to discuss a referral.

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NHS

Please have a look at the NHS conditions page for official guidance on cleft lip and/or palate, advice for parents and information about treatments available on the NHS. You will also find information about the current impact of coronavirus (COVID-19) on NHS services.