Questions & Answers

Our resident agony aunt answers questions submitted by children and young people with a cleft. If you’d like to submit your own questions, you can do so here!

“My nose is a bit round at the end and one of my nostrils is bigger than the other. This didn’t bother me until I went into year 9 and a boy started to make fun of my nose. I asked the surgeon for an operation on my nose but she said I couldn’t have one until I had stopped growing. Should I try to ask another surgeon to do the operation?”

Having an operation to try to stop someone bullying you by making fun of your nose is a bit risky. Most bullies are just looking for an easy target and will pick on anyone who is different, so chances are changing the shape of you nose probably won’t make him stop what he is doing.

Whenever you consider having surgery, you should think very carefully about the pros and cons and listen to advice from your parents/carers and doctors. If your doctor says you’re not ready to have the surgery, chances are it’s because you’re still growing and any changes made now will alter how your nose grows, maybe in a way you won’t like! By the time you’ve stopped growing, you’ll be in a much better position physically and emotionally to make an informed decision about having further surgery. It will be a decision that is personal to you and will affect you for the rest of your life – is this bully’s opinion so important that he should push you into deciding one way or the other? Do you want him to have that much of an impact?

Chances are, this bully is just looking to get a response from you, and he knows what buttons to press. There are a few different things you can try to stop the bullying, but remember that if it gets any worse or if it doesn’t stop you should always tell a trusted adult and get their help.

You could also ask for an appointment with the psychologist from your cleft team, as they will have a good idea of what you’re going through and can suggest some strategies for coping with any problems you’re having.

Wales 2009055_WEB (Medium)

Young people born with a cleft at a confidence-building CLAPA camp in Wales

I was born with a cleft lip and cleft palate, and my top jaw is much further back than my bottom jaw. When I went to the cleft clinic the doctor and the person who puts braces on teeth said that I could have an operation when I am older to bring my top jaw forward so it is line with my bottom jaw. I am not sure about this. I have already had quite a lot of operations and have worn braces for a long time. I am not really bothered about the way my jaw looks but my parents think that if the doctors say it is a good idea that I should have the operation. They think it would be best to have this operation as soon as possible. What should I do?

When you were a baby and a young child it was the job of your parents and the cleft team to make decisions about what kinds of operations would be best for you to have. Your parents would probably have wanted to know about the advantages of each operation as well as the risks or possible dangers.

As you get older, the choice about operations gradually comes over to you. Some people whose top jaw is further back than their bottom jaw do decide to have the operation you are talking about. Others decide not to have the operation. There are lots of things to think about such as the difference the operation might make to your speech, how long you would have to wear braces for before and after the operation, how the operation would change the way you look and whether the operation would fit in with all the busy things you are doing in your life like exams, college or starting work.

It is the job of the doctors and orthodontists (people who fit braces) to tell you about what operations are possible so that you can decide for yourself what you want to do. Your parents can be part of that decision but now that you are older it’s mostly up to you.

It doesn’t sound like you are unhappy about the way your jaws look. Lots of people have a visible difference in a part of their appearance. This visible difference might be a scar, a birth mark, a burn or jaw shape. The fact that there is an operation to change something doesn’t mean that a person should have that operation. The most important thing is feeling happy with yourself and feeling confident. Some people find that they feel better about themselves and feel more confident after an operation. Some people find other ways to feel better and more confident, and it sounds like you have embraced the way you look already.

In teenage years there can be a pressure to try to fit in with everyone and having any difference in your appearance can be a big worry. This pressure gets less for most people as they get a bit older so this is not a good reason to have the operation now if this is the only reason. I think it is helpful to know what is on offer but a good idea to think about this very carefully. You could make an appointment with one of the psychologists in your cleft team because it’s their job to help with these kinds of decisions.

“I am having teeth out soon. I think I am going to be bullied by people because of it, so how can I stop this?”

When something is going to change about how we look we expect everyone to notice it and for it to be a big thing to them like it is for us. This might turn out to be be true and people might notice, but usually they don’t notice or if they do notice they quickly forget.

What makes them more likely to notice is if we may it a big deal by trying to hide the change. In your case if you try to hide the space left in your gum you will make people realize that you are bothered about it. People usually bully others if they know it will hurt their feelings. It’s really hard to do, but if you can try to look as if having missing teeth doesn’t bother you at all. Try and laugh along with them. If they realize they are not hurting your feelings they will start to bully someone else.

Consider making an appointment to talk about this with the Psychologist with your cleft team so they can try to help you with it. If you get your parents or carers to call the cleft team they should be able to set this up for you. You could mention it to your dentist too and they could try to sort an appointment out for you.

sc90“Sometimes people stare at me, and I know it’s because of my scar and nose. What can I do?”

When you are walking through town and people appear to be staring at you, it can be quite upsetting and frustrating. It can make you feel self-conscious unnecessarily as it’s more than likely they aren’t looking at your cleft or even you. People may never have come across clefts before so they may just be curious as to what it is. It helps if you have a simple explanation ready in case anyone asks about it, as being able to confidently talk abut your cleft will make other people realise it’s not something to gawk at.

If they make comments or you think they may be judging you then try not to take it personally as they’re probably insecure and making fun of you makes them feel better about themselves. Instead of looking down and hiding your face, you could smile at the person to make them realize you know they’re staring at you, and this may embarrass them into looking away (and hopefully not staring again), or you may get a big smile back! If they don’t then at least it shows you’re not ashamed of yourself so they should move on. Just remember that no matter what you look like, it’s your personality that counts!

If you’re having real trouble with people staring all the time, have a look at these brilliant tips from Changing Faces.

“I don’t like how my lip scar looks. I don’t get bullied about it but I think that other people notice it. I like the rest of my face so want to know if there is an operation that I can have to make it go away?”

It would be great if we could make our bodies and faces change to exactly what we would like them to be and  back again if we didn’t like how things turned out! Unfortunately scars can’t be made to go away. They can sometimes be made less red, less lumpy or be made to blend in  better with the skin around them so you can’t see them so much, but you need to talk to your surgeon about whether an operation would make your scar change in any of these ways.

Sometimes the problem is not how a scar looks but is more about how we feel about a scar. Usually we are far more negative about how we look than other people do. You say  that you think other people notice your scar but I wonder if they do. It might be the case  that your eyes are drawn to your scar as a bit of a habit and it’s the first thing you notice  when you look in the mirror. It may be true that when you meet someone for the first time they do notice your scar, but that is probably just because it is unusual, not because they don’t like it.

I would guess that you don’t notice features such as moles or freckles that your friends  have unless they point something out and ask you about it. Even if they do point something out you will quickly forget about this feature and will just start seeing their whole face again. I am sure this is true with your friends about your lip scar. If you asked your friends about your scar, they would notice it but after a little while they would stop noticing and would see your whole face as they usually do.

Try to concentrate on the parts of your face that you do like and write them down in a list. You might even keep this list in your wallet or purse to read if you are having a bad day. Include other things about yourself in this list. For example, what else is good about you  such as being fun or being a good friend. Whenever we are really critical about one of our  features and really focus on it usually the problem seems to get bigger and we worry more.  If you feel able to, ask for an appointment with one of the psychologists in your cleft team.  It’s their job to try to help young people who have worries about their appearance like you  do. I don’t think you would need to wait until your next clinic appointment. It should be  possible to ring them and ask for an appointment.

For more tips on developing confidence and self-esteem, click here.

“I’ve recently started going out with this boy at school. He’s my first boyfriend and I’ve never kissed anyone before. I’m quite nervous about it, all my friends have done the whole kissing thing and say it’s nothing to worry about. But I’ve got braces on my teeth and I’m very self-conscious about it. I go bright red as well whenever I feel embarrassed. I’m beginning to wonder whether it’s all actually worth the effort?”

It’s exciting to have a boyfriend for the first time but a bit scary too. Chances are he’s a bit nervous as well! If you concentrate on enjoying his company and relaxing, then you’ll both have a good time. Remember he’s going out with you for a reason, and he probably has no issue at all with your braces!

Make sure your brace is comfortable, but don’t worry about it getting in the way. Kissing is all about the lips, and if you keep your lips soft and relaxed then your teeth shouldn’t get too involved. Just start off slow and see how you go! If you have any problems or if you get embarrassed, try to laugh it off. It’s not always easy, but your boyfriend is probably just as nervous about everything as you are, and being able to laugh about any slip-ups will make you feel able to relax around each other.PICT0031

“I’m starting a new school because we’ve recently moved house with my Dad’s new job. I’ve been at my local primary school for ages and now I’ve got to move to a big secondary school where I won’t know anyone. I’m shy and not very good at making new friends. I’m conscious that I look a bit different from other people as well because of my cleft lip and palate. I feel scared about my first day and I’m worried that everyone will have already made their new friends and they’ll be no room for me – what’s wrong with me?”

It’s natural to be a bit worried when you start a new school.

The secret is to be prepared. Think about what you might say to make friends, such as asking people about themselves and finding out what you have in common. Most people will be curious about someone new starting, and keen to get to know you, so make the most of that. Say “Hi” a lot and smile a lot. If you’re friendly to others, they’re likely to be friendly back. They may be looking for a new friend – friendships do change from time to time, and maybe there’s someone whose best friend has just left to go to another school.

If anyone asks about your cleft, have an easy, short explanation ready. “It’s just a cleft lip and palate” or “I was born with a gap at the top of my mouth which was stitched up when I was a baby.” Often people are just curious, and if you can reassure them that you’re fine now and that it doesn’t hurt, they’ll be much more at ease. If you feel confident enough, ask your teacher or form tutor if you can give a short presentation on cleft to educate everyone about it, maybe even as part of a fundraisng mufti day or cake sale to get everyone in a good mood.

“There are some bullies in my school who are picking on another girl. I feel really sorry for her as she doesn’t tell anyone about it. They call her horrible names, steal things from her and make her cry. Once they got her glasses and smashed them and threw them in the toilet. I want to do something to help her but I don’t know what. I don’t want to get on the wrong side of the bullies but I can’t stand by and watch it happen either. What should I do?”

It’s very difficult to watch someone else being bullied, and hard to do the right thing if you’re afraid the bullies might turn on you next.

Talk to the girl who’s being bullied and encourage her to tell someone. You could offer to go with her to tell a teacher. Think together about who would be a good teacher to approach, and reassure her that you’re on her side and that you’ll be right there with her.

Talk to your friends and decide together on a strategy next time you see someone being bullied. If you work together it’s easier and feels safer. For more tips on what to do if a friend is being bullied, try here.


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