Counselling for adults
CLAPA offers a dedicated counselling service for adults born with a cleft to help you cope with these challenges and feel better.
This page provides an overview of surgical treatment options for adults born with a cleft, the process on the day of your operation, and recovery.
The information here assumes that you are in contact with an NHS Cleft Team. Check here for information on getting a referral to your local team.
We would strongly recommend going to your Cleft Team with any questions or concerns if you’re considering further treatment, as they will be able to give you more personal, relevant answers.
The information on this page is general only and may not apply to your situation.
What surgical treatment is available for adults born with a cleft?
There are a number of potential surgical treatment options available as an adult. Not all options are suitable or available for all people, so talk to your Cleft Team about what treatment may be suitable for you.
Some common procedures for adult cleft patients include:
- Fistula Repair: Surgery to repair an holes left in the roof of your mouth that can affect speech, cause food to become stuck, or lead to food and/or fluid coming down your nose.
- Surgery to address speech concerns (e.g. palate lengthening).
- Jaw surgery (orthognathic surgery): Major surgery to bring your top and bottom jaws in line with each other. This may be to address concerns with function (i.e. chewing, biting) and/or appearance.
- Rhinoplasty: Surgery to change the shape of the nose. This may be to address concerns with breathing and/or appearance.
- Lip revisions: Surgery to change the shape of the lip. This may be to address concerns with discomfort (e.g. scar tightness) and/or appearance.
Consult with your Cleft Team about your concerns – they can advise what kind of treatment (surgical or otherwise) might be appropriate for you.
To get surgical treatment from the Cleft Team, the issue the surgery is addressing must relate to your
specific cleft type. For example, if you were born with an isolated cleft palate (a gap in the roof of the mouth only), this would not affect the shape of your nose, so you would not be eligible for a rhinoplasty through your Cleft Team.
Frequently Asked Questions
Treatment as an adult is optional, so it’s up to you whether to have it done or not.
Talk to trusted family, friends and you Cleft Team about treatment options before you make your decision.
It may help to talk to others born with a cleft about their experiences of decision-making for treatment or read through their stories. You can check out stories from adults born with a cleft, or find a support service which will let you talk to other adults with experience of returning to cleft treatment.
The Cleft Clinical Psychology team can talk things through with you to help you come to a decision and make sure your expectations are in line with what’s possible.
Yes. Talk to your Cleft Team about your concerns and they will support you with any changes and arrangements.
You can also ask to be removed from a waiting list if you are currently waiting for treatment.
It’s important to be aware that, very occasionally, treatment that you’ve already started cannot be reversed (e.g. orthodontic treatment in preparation for jaw surgery).
Make sure you talk to the Cleft Team about what would happen if you should change your mind about any planned treatment.
If you have a fear of needles, make sure to raise this with your Cleft Team before your operation. This could be when meeting with your surgeon, anaesthetist, or anyone involved with your surgery. You can also contact them about this at any time before your operation.
The team will discuss other options with you. These could include applying EMLA cream to numb your skin prior to injection.
If your needle phobia is severe, you may be able to have a gas induction instead. During a gas induction, you’ll have a mask
placed over your face and asked be to breathe in some gas which will send you to sleep. Once you are asleep, the needle will be put in; you won’t see or feel a thing.
Don’t be afraid to let them know if you don’t like needles. By informing the team, you’re helping them to take better care of you. The Clinical Psychologist in your team can provide therapy if you have worries related to treatment and think this would be helpful.
This will depend on the operation, so it is best to ask your Cleft Team what to expect in your case. Everyone heals at different rates, so this may vary for you.
To help your body heal, it’s important to avoid smoking both before and after the surgery.
Some procedures may result in soreness, tenderness or discomfort. You will be given advice on pain relief.
Recovery from the anaesthetic and other medications can take some time too, and may make you feel very sleepy. You may also experience short term side effects including nausea and constipation.
Bruising (e.g. dark bruises under the eyes if you have had a rhinoplasty) can take a few weeks to settle down.
Most swelling will go down in the first week or two, but don’t be surprised if it takes a few months for all of the swelling to completely disappear.
Some procedures are not thought to have reached the ‘final’ result until a year afterwards. Any new scars made (e.g. from a lip revision) can take weeks or
months to reduce in redness. You may also be expected to wear bandages or other dressings for some time after surgery.
If you have any concerns about coping with these visible changes after surgery, you might find it helpful to talk to the Clinical Psychology Team about how to
manage this.
This depends on the procedure and on the Cleft Team or consultant’s practices. Your
consultation before the surgery is a good chance to ask about what to expect afterwards.
For example, if you need to come back in to have stitches removed, or what to do if you experience excessive bleeding, etc.
If you’re having surgery done privately, make sure to have a look at our information on Private Treatment as there are a few extra things to keep in mind.
This will depend on the type of work and activities you do and the treatment you’ve had. You will need to speak to your Cleft Team for more advice on this. However,
you would generally expect to be back to work, study and other activities sooner if what you do is not very physically demanding (e.g. working in an office or from home).
Having time off work as an adult can have a financial impact. Make sure you check your employer’s policies around this and ask any questions around this in advance
to ensure you are confident about taking the time you need to recover.
Legally, all you need to tell your employer is that you will be taking medical leave and provide a doctor’s note confirming how long this is expected to last. You do not need to tell your employer that you are having an operation or what it is for.
If you feel comfortable to do so, it can be helpful to explain what the operation is for and if, for example, there will be changes to your appearance, or if you will
need any other support upon returning to work. This is entirely up to you, however.
Some employers’ medical leave policies will not cover operation which is ‘purely elective’ or ‘cosmetic’. If your employer
refuses your request to take medical leave on these grounds, talk to your Cleft Team. They may be able to provide proof to your employer that your surgery is medically necessary.
Read more about your rights when it comes to sick leave on gov.uk or Acas.org.uk. These sites can tell you what you can do if you believe you are facing discrimination from your employer.
What happens on the day of an operation?
This section gives a brief overview of what will happen when you go in on the day of your operation. The details will depend on your hospital and the specific operation you're having, so it's always best to get your information directly from your Cleft Team. This is general information only.
Every hospital’s procedure will be a little different, so it’s worth asking for details at your pre-operative appointment (usually a couple of weeks before your procedure) for more specific information.
Most hospitals will also give you a booklet and other information about what to expect on the day. This should answer most of your questions.
It may not be safe for you to go in for surgery if you have a cough or a cold in the days leading up to it. Contact your Cleft Team if you are unwell, as the surgery may need to be rescheduled.
To be in the best health for the surgery, and to give yourself the best chance at
healing, it’s important to follow any
advice from your Cleft Team (such
as avoiding smoking) before the
surgery and until the wounds are
completely healed.
Depending on the instructions on your admissions letter, you will probably not be able to eat anything after a certain time the
night before your surgery. You might also not be able to drink anything after a certain time.
For your own safety, it’s vital that you follow these instructions exactly and ask for clarification if you’re not sure.
Once you arrive at the hospital on the day of your surgery, you’ll head to the admissions area indicated on your admissions letter. Here they will check your name, date of birth, and the reason you’re in hospital. They may ask you multiple times to confirm this information throughout your stay. This is
one of many ways the hospital makes sure the right treatment is given to the right person.
You’ll also be given a bracelet to wear on your wrist which contains your name, address, and date of birth. You’ll keep this
on throughout your entire stay in hospital.
Once you’ve been ‘checked in’ a nurse and/or anaesthetist will ensure you’re still fit for the operation; this might involve checking your blood pressure
and other details. You’ll be asked about any recent illnesses or injuries, as well as any medicines you may be taking, or
allergies you may have.
Your surgeon will also visit to have a chat. This is a great time to ask any final questions before going to theatre.
At some point, usually before the nurse and/or anaesthetist checks you over, you will be asked to change into a hospital
gown and put compression stockings on your legs. Blankets will be available to keep you warm. Your belongings will usually be put in a plastic bag which can be left with any friends or family accompanying you, or passed on to the ward in which you will be recovering.
Each surgical theatre has a ‘list’ for the day. This is the order the operations will happen that day.
If you are first on the list you’ll usually be taken to theatre around 8-9 in the morning.
If you’re further down the list you may not be taken to theatre until the afternoon. Feel free to ask where you are on the list to give you an idea of when you might go to theatre. You can’t eat or drink before the surgery and you may be waiting a while, so take a book or something else to keep you occupied while you wait.
When it is time for your operation an orderly will come and collect you to take you to theatre. Any family or friends won’t be able to follow you past this point. Some hospitals will wheel you into theatre on the bed, other hospitals will ask you to walk to theatre if you’re able to do so.
You may be told how long your operation is likely to take, but keep in mind that this is usually the length of the operation itself
and might not account for the preparation involved and the time you spend ‘waking up’ in the recovery ward. This means
that you’ll probably be ‘away’ longer than the time given. Any family or friends with
you should provide a contact number so this can be passed on to the ward you’ll be
recovering in. Ward staff will call this number when you’re settled in the ward after surgery and ready for visitors.
Once you arrive in theatre you’ll be asked to lie on the bed. You will have a few sticky pads put onto your chest and abdomen so the anaesthetist can monitor
your heart and lungs while you’re asleep. These pads may be cold, but they won’t hurt.
They will then clip wires into each of the pads and connect them to a machine. You may also have a leg compression device placed on your legs if you’re going to have a long operation or be bedbound for a while afterwards. This machine will
help to stop blood clots from developing in your legs.
Once you’re ready to be put to sleep, the anaesthetist will talk to you and start the process usually by placing a needle (cannula) in your hand or arm, or sometimes by getting you to breathe in anaesthetic gas through a mask.
Some procedures, such as some lip revisions, do not require a general anaesthetic (which puts you to sleep), but are instead done using local anaesthetic
(which numbs sensation in the area while you’re awake). The Cleft Team will let you know what kind of anaesthetic you will have.
The next thing you know, you will wake up in the recovery ward. It may feel a bit disorientating at first, but a nurse will be right there monitoring you the whole
time, so you can be assured you’re in safe hands.
Sometimes during long operations, the doctors need to insert a catheter, which is a tube that goes into your bladder and
allows it to empty without you having to go to the bathroom. This will be removed once you are able to walk around.
You’ll be kept on the recovery ward for a little while until the anaesthetic wears off and you can be wheeled back up to the
ward where you’ll stay after the surgery.
How long you have to stay on the ward is something your team will let you know. You may be out on the same day, or have to stay a night or two depending on the treatment you have and how your recovery goes.
Find support
Need to talk it through? Check out CLAPA's support services for adults born with a cleft.
Peer Support Service
Our Peer Support service is a quick and simple way to talk to a trained volunteer adult one-on-one about whatever’s on your mind.
Adults’ Facebook Group
CLAPA’s Adult Support Group on Facebook has over 2.5k UK members swapping stories, sharing photos, celebrating successes, and supporting each other through the toughest parts of their cleft journeys.