This section of the CLAPA website is mainly aimed young people from age 13 and above who were born with a cleft lip and/or palate.
It’s designed to give you a summary of some of the things you may be experiencing, and what treatment you might go through now and in the future.
We’ve tried to answer some of the most common questions and concerns that people have at your age. If you want more information, talk to your Cleft Team or leave us a comment at the bottom of the page. There are also links to other helpful resources and websites throughout this section.
There are many other young people in the UK who, like you, were born with a cleft, so whatever stage of treatment you’re at, you’re not alone.
Make sure to check out our Videos & Media page which is all about young people like you creating and sharing content with the cleft community.
Sign up for CLAPA’s Youth Forward e-newsletter for under 18s, packed with stories, advice, information and articles from other young people born with a cleft.
Growing up with a cleft
When you were younger, your parents will have made the decisions about your treatment together with Cleft Specialists at the hospital. You will have had operations as a baby, which might have included one to close the gap left by your cleft, and you may have had other operations to help with your speech or an Alveolar Bone Graft when your adult teeth started growing through.
As you get older, you will naturally become more involved in your own care. If you are curious or worried about anything, you should feel free to ask your Cleft Team until you understand and feel comfortable with your treatment options and plan.
Remember, everyone in your Cleft Team is working to make sure you’re healthy and happy, and that includes making sure you don’t feel worried about anything to do with your cleft or treatment.
If you’re under 16, professionals will want your parents to be involved so they can support you with any treatment, but you might find that you have questions that you don’t want to ask in front of your parents. It’s fine to ask to speak to someone from your Cleft Team by yourself, or to ask for an appointment with the Clinical Psychologist to help you talk through any worries.
The Clinical Psychologist can also help you with important decisions like whether or not to undergo further treatment or surgery. It’s okay to be unsure about this, or to have a different view from other people, even your parents. For example, some young people with a cleft decide against having jaw surgery, while others choose to go ahead with it. It’s important to listen to your clinicians and make sure you have all the information before making a decision, but remember that ultimately it’s up to you.
When you are 16-20 years old, if you have finished your treatment you will probably be discharged from the Cleft Team. This means your ‘treatment pathway‘ is finished. However, you can still have further appointments or treatment at any time in the future if there’s anything else that you think would be beneficial for you.
It will be your responsibility to book appointments and get help for any problems you’re having, but it will also mean you’re in control of your own healthcare, which is an important step towards adulthood. If you lose contact with your team or move to a different area you can find contact details of your nearest team here.
Top tip: Write down any questions or worries you have before an appointment with your Cleft Team, and take your time to make sure all of them are answered. Even if you think they’re silly questions, it’s important to ask!
What treatment might you receive?
Every Cleft Team is different, so it’s important to talk to yours if you want to know more about what you can expect over your teenage years.
The treatment you receive from the Cleft Team may include some of the following depending on your unique concerns and needs:
- Orthodontic care (e.g. braces)
- Orthognathic (jaw) surgery
- Discussions with a Clinical Geneticist if you are curious about whether any children you may have in the future are likely to be born with a cleft.
- Revision surgery for your lip and/or nose
- Dental care
- Advice about your speech and accessing therapy if you need it
- Appointments with the Clinical Psychologist to talk through any problems or worries you’re having and to support you in making decisions about further treatment
Published: November 2015
Next Review: February 2017
Source(s): Range of existing literature from CLAPA, including a leaflet produced by the Royal College of Surgeons in association with CLAPA. Stories and suggestions from teenagers born with a cleft have been included throughout. Information from Changing Faces was also consulted. This information has been reviewed by cleft health professionals as well as CLAPA’s Children and Young People’s Council.
If you have a comment or question about the information in this page, or would like to know more about the sources of this information, please contact Communications & Information Manager Anna Martindale at [email protected] or 020 7833 4883.