What is a cleft lip and palate?
A cleft lip and palate is a facial deformity which develops as the two sides of a baby's face come together when they are growing in their mother's womb. It can be described as a gap or hole in the roof of a baby's mouth or lip.
Babies can be born with a cleft lip, cleft palate, or both. And the 'hole' can be just on one side (unilateral) or both (bilateral).
I was born with a unilateral cleft lip and palate.
How many operations do children born with cleft have?
Sadly there is no straightforward answer to this question. The amount of surgeries will vary from patient to patient, from as little as one to as many as 30 (or more). There are certain key initial; surgeries, for example repairng the lip, palate or both within the first year of a baby's life, and then there can be other linked surgeries as you get older.
I've had 10 operations in total - to help me hear, breathe, increase my self-confidence and to improve the structure of my face.
How old are cleft patients when they have each surgery/treatment option?
Every patient is unique so the exact age of patients when they have surgery/treatement can vary.
This is a very rough guide (based on my expereinces):
3 mths: Lip repair
9 mnths: Palate repair
2 yrs: Grommets fitted
9 yrs: Grommets fitted
9 yrs: Wire brace for bone graft preparation
9 yrs: Bone graft
10-16 yrs: False tooth on retainer
16-21 yrs: 'Train track' wire braces (with occassional elastics)
18 yrs: Wisdom teeth
18 yrs: Jaw surgery
19 yrs: Jaw surgery with bone graft
20 yrs: Nose surgery
20 yrs: Lip surgery
21yrs: Permanent false tooth on a bridge
Can cleft patients eat normally?
Yes and no. Most of the time those born with a cleft can eat absolutely normally - apples, toffees, tough steaks or sticks of rock - bring it on!
There are times though when you may eat differenly. For example, babies may need a special bottle because they may be unable to feed from their mum or through an unspecialised bottle because they can find it hard to suck.
Other times might be after operations, for example after jaw surgery a liquid diet is necessary for the first few weeks (I have a
menu of alternatives to soup and smoothies which can help anyone who feels a bit stuck for what to eat post-op).
You might also avoid certain foods when wearing braces - toffee, chewing gum, fizzy drinks and avoiding biting directly into apples. Personally, I still don't have chewing gum or bite into apples, but this is just my personal preference - after years of forming these habbits it feels weird to go against what I've always known.
What do I say if someone asks why I look different?
This is very personal, and may be different depending on the circumstances: who you're talking to (how well do you know them), how they've asked, how you're feeling at the time, whether there's a time pressure.
I would always suggest you tell the truth - using a situation to help educate someone can often feel really positive and empowering.
At times, I know this can be really hard. If you don't feel like talking about your cleft you could just say 'it's just how I was born', and quickly move the conversation onto far more interesting things, like the other person's favourite film, sport or hobby.
When and how should I tell someone about my cleft?
If you decide you want to tell someone about your cleft but aren't sure how to go about it or when to, that's okay. There’s not really a ‘perfect time’ to tell someone about your cleft, but preferably you should tell someone when there aren’t too many distractions.
To help bring it up, you can always pre-empt that the conversation will be a bit 'out of the ordinary' - this will help 'set the scene' and help you get your words out.
You could start with something like...
- 'I just wanted to tell you something quickly...'
- ‘This isn't a big deal, but I just wanted to let you know...'
- 'Do you have a minute, I just wanted to tell you about something...'
- 'Hey, there's not really a right time to tell you this, but I just wanted to let you know...'
- 'I know this is gonna sound a bit out of the blue, but I just wanted to tell you about something...'
- 'This may sound a bit odd to tell you, but just wanted to tell you about how I was born...'
You can then explain your cleft in the way you feel most comfortable.
For me, I found that asking the other person if they knew what a cleft was (just as a basic question) would be really helpful in telling them about myself. It also put me in a position of power because I was choosing to tell them, and I was educating them about the condition.
I’d say something like:
'Hey, just wanted to have a quick chat, it's nothing serious, but I was wondering if you know what a cleft lip and palate is'
If they answered yes:
'Oh right, well I just wanted to tell you that I was born with it'
If they answered no:
Oh okay, well it's something you can be born with, and it’s where the two sides of your face don't come together properly when you're growing in your mum's womb. It just means you can have a whole in the roof of your mouth or in your lip. And yeah well I was born with a cleft lip and palate, it’s not a big thing, I just wanted to let you know’
It can feel a bit awkward or a bit ‘stilted’, but that’s okay.
It can help to downplay it:
- ‘It’s not a big deal...’
- ‘It’s not a major thing...'
- ‘It’s just a little thing...’
Or to pre-empt that you want to tell them, but not spend long talking about it:
- ‘Have you got a minute...’
- ‘Just wanted to say something quickly...’
- ‘This will just take a sec...’
- ‘Just really quickly wanted to tell you..’
- ‘This won’t take long, just wanted to ask…’
If you want to tell someone then you should. They might ask questions, or, depending on the situation, you might go on to say about your treatment (in however much detail you decide is appropriate). It may be that the conversation goes deeper - they may share something personal, or I’ve sometimes decided to talk about the psychological impacts, but this isn't where the conversation needs to go and I don't always want that. So then it's good to move the conversation on (so you can talk about something far more interesting).
It can feel a bit abrupt, but it's not always easy to explain cleft or randomly tell someone that you're born that way, even though you want to and you trust they'll listen and be sensitive.
Having friends who knew about my cleft really helped me. It could feel difficult to bring it up, especially when they hadn't noticed/didn't say anything about the way I looked. Often I wouldn't want to talk about it or tell anyone because I didn't want to feel different and I didn't want it to be a 'big deal'. However telling someone can be a really lovely and important thing to do - it means you can share your treatment (which is useful when appointments can interrupt school days), have someone outside your family you trust and can talk to about your treatment (the good and bad), plus it can mean you have someone in your corner if ever that's necessary.
I feel something is wrong with my treatment, what should I do?
My advice would be to write down your feelings - whether it's a pain that you feel that is unusual, a worry that you don't think you're doing something properly (like being able to brush your braces correctly or align elastics), a gut instinct that something isn't right with your treatment or you're not happy with how a part of your treatment is progressing.
Next, tell someone about how you feel. This may be a family memeber, a friend, your psychologist or doctor. Rememeber, every cleft team has a specialist cleft psychologist who can help you express your concerns, work through them or even support you telling your doctors how you feel.
Telling your doctors may feel intimidating, but remember they will want to help you, and telling them if you think something is wrong is really important. Feel empowered to tell them some extra information about yourself that can help them do their job and provide better treatment.
In summary, if you're worried about telling your doctor something, you can:
- write down your worry on a piece of paper/on your phone
- ask a family member or friend to come with you to the appointment for moral support
- ask for help from a cleft psychologist
What causes a cleft?
The simple answer is: we don't know.
The are questions around genetics, environmental causes and mere coincidence. For example, I was told that my tongue could have been in the way whilst I was developing in my mum's womb, and this is why my face didn't join together properly.