Media Guidelines

About Cleft Lip and Palate

Cleft means ‘split’ or ‘separation’. During early pregnancy separate areas of the face develop and then join together (fuse) in the middle. If some parts do not join properly the result is a gap or ‘cleft’. Repair surgery involves taking the tissues that did not join up during pregnancy and putting them back together.

A ‘cleft lip’ is a notch or gap in the upper lip which can range from a small notch in the coloured part of the lip to a wide gap that extends up into the nostrils. A ‘cleft palate’ is a gap in the roof of the mouth.

1 in 700 babies are born with a cleft across the world. That’s 1,200 each year in the UK.

A cleft by itself is not a disability, though it may affect someone in a way which means they need extra support, e.g. hearing aids, speech therapy. In some cases, the extra support needed is substantial and long-term enough that it may be considered a disability, or may be looked at as being ‘under the same umbrella’ as disability.

How does it happen?

The causes are complicated; for some it runs in the family, but for many it’s a complete surprise, the result of many different genetic and environmental factors coming together in a way that can’t be predicted or knowingly prevented.

It is very unlikely that a child’s cleft developed because of something the parents did or didn’t do. In a minority of cases, a cleft is caused by a syndrome such as Pierre Robin Sequence or Stickler Syndrome, and these will have their own causes and outcomes.

Because of how complex cleft is, it’s unlikely there will ever be ‘a cure’, but there is a great deal of research focused on improving our understanding of the many factors that can contribute to a cleft. In the meantime, CLAPA is focusing its efforts on supporting people with and affected by the condition.

What does it mean for a child?

Depending on the type and size of a child’s cleft, it can impact them in different ways.

Feeding: A cleft palate and/or a wide cleft lip often means a vacuum cannot be formed with the mouth which prevents suckling from a breast or bottle. CLAPA provides special bottles to around 75% of families affected by cleft in the UK to help with feeding. Some babies will need a nasogastric tube which runs from their nose to their stomach.

HearingCommon childhood hearing issues such as glue ear are far more likely if a child has a cleft palate. Many children with a cleft palate need grommets or hearing aids.

Speech: A cleft palate means extra air can escape through the nose while speaking, causing speech to sound nasal or muffled. Around 50% of children with a cleft palate need ongoing speech therapy to help with this. By age 5, around 40% of these children will still have noticeably different speech to their peers.

Teeth placement: Most children with a cleft affecting their gum will need some orthodontic work, usually including surgery at 7-10 years old. Children with a cleft are also more susceptible to tooth decay and other oral health issues which can extend well into adulthood.

Facial growth: In some cases, a cleft lip can cause a child to grow up with a ‘flat’ profile and/or an underbite. In some cases, further surgery will be offered to help with both functional and cosmetic concerns.

Educational AchievementCleft is not linked to learning difficulties, but in general children with a cleft have lower educational attainment levels to their peers. Recent research suggests this is not to do with their genetics, so it’s likely this is because of a lack of support in schools for hearing, speech, and other issues which may limit a child’s engagement in education.

Emotional wellbeing: A cleft often means a child will grow up looking or sounding different to their peers and having multiple hospital appointments which may include surgeries. Coping with staring, comments and bullying and discrimination can impact on emotional wellbeing and self-esteem.

How is it treated?

Cleft has a 20 year treatment pathway which is handled from the point of diagnosis by one of the multidisciplinary NHS Cleft Teams around the UK.

A cleft lip is surgically repaired when a child is 3-6 months old. A cleft palate is repaired between 6-12 months. Every child’s cleft is unique, as are their treatment needs, which will be handled by one of the multidisciplinary NHS Cleft Teams around the UK.

Treatment may include further surgeries to improve speech, hearing, teeth placement, and change the appearance of the face and profile. Some of these are major surgical procedures requiring years of preparation and a lengthy recovery time. Hearing aids or grommets are commonly used to improve hearing in children with a cleft palate, and around half will also undergo speech therapy.

WRITING ABOUT CLEFT

Terms and Language

The term ‘harelip’ (or ‘hairlip’) is outdated and offensive; it should not be used.

Cleft lip is one or more gaps in the upper lip. Cleft palate is a gap in the roof of the mouth. Someone can be born with a cleft lip, a cleft palate, or both. These terms should not be used interchangeably.

‘Cleft palate’ is often incorrectly used to mean ‘cleft lip’, or ‘cleft’ as a condition. Please check these diagrams to make sure you’re using the right terms.

We refer to cleft and types of cleft as singular, so “people born with a cleft palate” rather than “cleft palates” or “clefts“.

Disfigurement’ has a legally protected meaning, but as we are not a campaigning charity, we prefer not to use it. We also do not use the terms ‘birth defect’ or ‘deformity’ due to their negative connotations. We prefer ‘condition’, ‘visible difference’, or a description of what a cleft is (see above).

We avoid words like ‘improve’, ‘fix’, ‘problems’, or ‘normal/abnormal’, as these are value judgements which make assumptions about how people may think of their cleft. We prefer more neutral terms like ‘affects’, ‘change’ or ‘difference’, e.g. ‘A cleft can affect teeth’, ‘surgery to change the shape of the nose’, or ‘Jane’s cleft palate means her speech sounds different to other children’.

Writing about people affected by cleft

When describing people born with a cleft, use neutral, objective language which acknowledges a difference without placing a value judgement on this difference, assuming the impact it has on the individual, or implying it’s the fault of the individual or their parents.

Try not to sensationalise cleft or the ways in which it may affect someone’s life, and to always take care to humanise the subjects of any articles to evoke empathy rather than pity. Most people will empathise with (for example) a mother worrying about her young baby having surgery, and we believe it’s important to focus on these shared emotions and experiences when telling a story, rather than ‘othering’ someone because of a condition like cleft.

Avoid overly patronising phrases about how someone’s personality or another quality is more important than their appearance (e.g. “It’s what on the inside that counts”), as this is typically uncalled for and assumptive of an individual’s values and views of cleft.

Never suggest that the audience’s inaction will cause harm to a particular individual (e.g. “Without your help, Tom’s local CLAPA group will be shut down and he will have no one to talk to.”).

Readers should never be asked to express an opinion on someone’s appearance (e.g. “Like this post if you think Jane is beautiful regardless of her cleft!”), and a particular person born with a cleft should never be used to ‘prove a point’ (e.g. “The media doesn’t believe people with scars are beautiful, but look at Jane!”).

ABOUT CLAPA

The Cleft Lip and Palate Association (CLAPA) is a small charity working to improve the lives of people born with a cleft and their families in the UK.

Three babies are born with a cleft every day in the UK. CLAPA is a community of families, patients and health professionals, all dedicated to raising awareness and working together to overcome any barriers caused by cleft lip and palate.

Our vision is of a society where everyone affected by cleft feels supported, connected and empowered to take control wherever they are on their cleft journey.

CLAPA works closely with NHS Cleft Teams, but we are entirely independent and receive no government funding. We rely on fundraising and donations from the public and grant-making organisations to continue our work.

Our Work:

  • Online and local support groups to help people affected by cleft to feel positive, connected, and in control.
  • Local and national events to bring people together so no one has to go through their journey alone.
  • Providing specialist feeding equipment for babies born with a cleft in the UK, including supplying over 700 new families with free ‘Welcome Packs’ each year.
  • Training parent and patient volunteers to provide one-on-one support to those in need of reassurance, information and a listening ear.
  • An accredited information service that is comprehensive, accessible and community-led.
  • Training volunteers who help to educate schools, local communities and healthcare professionals about cleft lip and palate here in the UK.
  • Collaboration with researchers to make their work accessible to our community. We are well-respected as the voice of people affected by cleft in the UK, and our staff and volunteers sit on a number of boards and committees looking to improve and inform cleft care.

CONTACT DETAILS

 For general media enquiries, please contact Anna Martindale (Communications & Information Manager) on 020 7833 4883, or at [email protected]

We would be happy to act as a sensitivity reader to ensure the correct terms are used.

MORE RESOURCES

Face Equality International has produced an International Media Standard on Disfigurement which CLAPA fully supports.

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