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Cleft Lip and Palate

Cleft Lip and Palate. What is it?. ‘Cleft’ means ‘split’ or ‘separation’ During pregnancy, parts of the face form separately and then join together. Sometimes they don’t join properly and the result is a ‘cleft’.

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Cleft Lip and Palate

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  1. Cleft Lip and Palate Registered Charity England & Wales (1108160) and Scotland (SC041034)

  2. What is it? • ‘Cleft’ means ‘split’ or ‘separation’ • During pregnancy, parts of the face form separately and then join together. Sometimes they don’t join properly and the result is a ‘cleft’. • One in 700 babies are born with a cleft. In the UK, that’s three every day and over 1,000 every year! Registered Charity England & Wales (1108160) and Scotland (SC041034)

  3. What is it? • A ‘cleft lip’ is a split in the upper lip, which may be on one or both sides of the mouth. • A ‘cleft palate’ is a split in the roof of the mouth. • A baby can be • born with a cleft • lip, a cleft palate, • or both a cleft lip • AND palate. Unilateral Cleft Lip Bilateral Cleft Lip Registered Charity England & Wales (1108160) and Scotland (SC041034)

  4. How Does It Happen? • It occurs in the first trimester (three months) of pregnancy • There is no single explanation for cleft lip and palate • Sometimes it is genetic and there is a clear family history • Sometimes it happens as a ‘one off’ when a number of environmental and genetic factors work together in a way that could not have been predicted or prevented Registered Charity England & Wales (1108160) and Scotland (SC041034)

  5. How is it treated? • SURGERY • Surgery is needed to close the gap in the lip and/or palate. This will usually take place before a baby’s first birthday. • The operation to repair a cleft lip will normally be within the first 2-3 months. • The operation to repair a cleft palate usually takes place between 6-12 months. • More surgeries may be needed depending on the child and their cleft. Registered Charity England & Wales (1108160) and Scotland (SC041034)

  6. How is it treated? • Other Treatments Include: • Hearing aids or grommets to help with hearing problems caused by a cleft palate. • Speech therapy to help children pronounce certain sounds and speak more clearly once their cleft is repaired. • Dental work and bracesto help teeth grow properly. • More surgery at 8-10 years old, as a teenager and even as an adult to help with teeth placement and facial growth. Registered Charity England & Wales (1108160) and Scotland (SC041034)

  7. Every cleft is unique! Registered Charity England & Wales (1108160) and Scotland (SC041034)

  8. What is ‘CLAPA?’ • The Cleft Lip and Palate Association is a charity set up in 1979 to help patients, families and health professionals work together to support people affected by cleft lip and palate. • Our vision is: “A society where having a cleft lip and/or palate is no barrier to achieving your desires and ambitions” • We believe that everyone affected by cleft lip and palate should get the best possible information, care and support throughout their lives. Registered Charity England & Wales (1108160) and Scotland (SC041034)

  9. Helping Parents • Information, advice and a supportive community • Trained volunteer ‘Parent Contacts’ to listen and provide one-to-one emotional support • Special bottles and teats so parents can feed their babies • Family days and local support groups “I feel privileged to have been blessed with a baby with a cleft for the joy he brings and also for the people I have met through the groups I have joined. The parents and their children are inspiring, brave and strong and I count myself lucky to be one of them.” Registered Charity England & Wales (1108160) and Scotland (SC041034)

  10. Helping Children & Young People • Children and Young People’s Council made up of members from around the UK to talk about the issues that matter to them • Free Weekend Camps and Family Days to help young people with a cleft meet others like them and make friends locally • Creating an online community of young people sharing experiences, stories and advice to help each other through any problems they have growing up – CLAPAEdge.com “Meeting other people with a cleft lip made me feel I was the same as everyone else and gave me more confidence to try new things!” Registered Charity England & Wales (1108160) and Scotland (SC041034)

  11. Helping Adults • Adult Voices (formally ‘Adult Council’) formed in 2010 to discuss issues faced by adults with a cleft and how CLAPA can help. • Online Support Groups where adults can get in touch with each other to share stories and advice. • Support and information for adults looking at continuing treatment. “Finding CLAPA was such an eye-opener for me…it’s changed me fundamentally as a person and how I think about my cleft!” Registered Charity England & Wales (1108160) and Scotland (SC041034)

  12. Volunteering • Volunteering Opportunities Include: • Representing others affected by cleft in many different ways, including as a local Committee Member and by sitting on research panels. • Training as a Parent Contact to give one-to-one emotional support. • Direct involvement in support through our local Branches and Happy Faces Groups. • Volunteering at clinics and giving presentations on cleft to midwives and other health professionals. • Helping CLAPA by picking up cheques and representing us at events. Registered Charity England & Wales (1108160) and Scotland (SC041034)

  13. Working with the NHS • Promoting patient involvement at all levels • Acting as the voice of service users to represent their needs and wishes • Educating health professionals about cleft lip and palate • Providing information and literature on the condition • Working closely with specialist Cleft Teams to deliver the best possible care and support for patients and families Registered Charity England & Wales (1108160) and Scotland (SC041034)

  14. Our Values User Involvement Making sure that patients and their families have a say in all aspects of cleft care, and that their needs are taken into consideration. Equity of Service Delivery All 12UK Cleft Teams should have the same high quality services, and everyone should have equal access to these. Local Support No matter where they live, everyone should be able to receive excellent support in their local community. Representation Our membership should be active, diverse and inclusive, and our work should reflect the things that are most important to them. Registered Charity England & Wales (1108160) and Scotland (SC041034)

  15. Thank You! Registered Charity England & Wales (1108160) and Scotland (SC041034)

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