Cleft lip and palate

The Cleft Lip and Palate service provide specialised care, treatment and support for babies, children and adults with cleft lip and palate.

A cleft lip is a gap in the upper lip and a cleft palate is a gap in the roof of the mouth.

We also see people who may be experiencing speech problems related to how well their palate is working for speech even when there is no obvious cleft palate.

Our service is operated by an experienced team of specialists from a range of clinical disciplines, including:

Surgeons
Speech and language therapist
Psychologists
Specialist nurses
Dental professionals
Medical photographers.

We also work with smaller, local hospitals to provide outreach clinics. You can speak to your doctor about clinics available near you.

Who is part of the team?

Cleft specialist nurses

There is a team of four cleft specialist nurses for the Northern Region. We aim to see you and your baby within 24 hours of their birth or we may have met earlier if your baby was diagnosed on a scan during pregnancy. We aim to support you and your family through the first few weeks of the baby’s life with advice on feeding and weaning.

If you need help with transport for your face-to-face clinic appointments the nurse from your area will be able to help you organise this with your GP.

During your face to face or telephone appointment you will have the opportunity to talk with the specialist nurse who will answer any questions and advise you on who would be the best person to answer more specific queries.

Clinical psychologists

There will be a psychologist present at most clinics. The psychologist’s job is to understand and talk through the concerns young people and families have about their cleft lip or palate.

You can discuss concerns at clinic or at a later appointment. Examples of the sorts of things a psychologist can help with are:

Concerns about appearance
How to deal with the reactions of others
Worries about hospitals and treatments
Dealing with teasing and bullying
Making decisions about treatments and the future
Any other worries about the cleft lip or palate

Consultant Cleft and Plastic Surgeons

The team’s cleft lip and palate surgeons will look assess your child and will:

See what operations could help with appearance.
See what operations could help with the part of the palate that is used for speech.
Explain operations to parents and children so that they understand why an operation has been suggested and what will happen.

If your child needs an operation this will take place at the Royal Victoria Infirmary.

Just before the operation, they will talk through what they are going to do during the operation. Patients and families will also meet the consultant anaesthetists at this time. Our surgeons will meet patients and families in clinic again a few weeks after the operation to check that all has gone well and then regularly over the years as the patients grow.

Ear, Nose and Throat Surgeons

A cleft palate can be associated with problems with hearing because of glue ear.

You will see an ENT surgeon at a hospital near to you to help with any problems your child is having with hearing.

Genetics team

The genetics team routinely review the photographs and clinical histories of all children with a cleft. This is to help the team work out why that child was born with a cleft.

The genetics team can help with questions some patients ask such as:

Why was my child born with a cleft lip/palate?
What are the chances of us having another child with similar problems?
What are the chances of my child having children with a cleft?
Is there anything I can do to prevent it happening again?
What are the advantages and disadvantages of having detailed ultrasound scans during pregnancy?
I have a cleft myself, what are the risks of it happening in my children?
What, if any, investigations can you offer me in a pregnancy?

Orthodontist

An orthodontist will look at the position of the teeth and the jaw to see how they are growing.

Braces are needed at different times for children with different kinds of clefts, but is generally not started before the age of ten.

Paediatric dentist

The role of the paediatric dentist is to try and help you prevent dental diseases by encouraging your child to eat and drink the right types of foods and drinks.

The paediatric dentist will work with your own dentist to maintain the teeth and gums so that the orthodontist, speech therapist and surgeon can treat your child effectively.

You will be encouraged to attend your family dentist for regular appointments as well as seeing the dentist at your cleft clinic appointments.

Photographer

Medical photography is undertaken in all clinics to keep patient records up to date and accurate.

Each time your child comes to see the cleft team the photographer will also be present, and patients will be asked if they would mind having some photographs taken.

The pictures are incorporated into medical case notes to help in the planning and assessment of clinical treatment.

Photographs could be required of the following areas:

Face and inside the mouth (palate) – for the surgeon to check the progress of a cleft repair
Teeth – for the orthodontist and the paediatric dentist to assess oral health and decide on a course of treatment.
Hands and feet – for the geneticist to find out more about the patient, and perhaps pick up subtle clues that can help with a diagnosis.

Additional photographs may be taken with a camera that takes a 3D image of the patient’s face. This can help the team look at any facial changes or growth.

Speech and language therapy

The speech and language therapists with the cleft team will be at all the clinics.

If your child has a cleft palate, or speech problems related to how well their palate is working even when there is no cleft palate, they will monitor their speech development regularly.

They can tell you about:

Speech development
What can happen to speech when someone’s palate is not working well enough
How to help your child’s speech development

If it is decided that your child would benefit from a videofluoroscopy (talking x-ray assessment) then this will be arranged in clinic.

How often will an appointment be necessary at the clinic?

You child will be reviewed by the cleft team at regular intervals. The exact timing of this will depend on the age of your child.

After the initial contact with the team’s nurses within 24 hours of birth, the whole team usually sees newborn babies and their parents within the first few weeks of their life.

This gives parents the opportunity to meet all of the team and to take a role in making decisions about treatment and support. It also gives parents a chance to get more information and to have their questions answered.

Older babies, children and young people will usually be seen at regular intervals which can vary between six months and several years depending on the needs of the individual.

Adults will be seen in clinic in order to assess whether any further treatment or support would be helpful. Clinic appointments will then be made to help with planning or reviewing this treatment or support.

How long will the appointment take?

We will try to make your visit to the clinic as efficient as possible. However, seeing a lot of different team members takes time. We also try to split into small groups when we see patients and their families so that there are as few people in clinic rooms as possible. This means that you will have lots of different conversations with the different team members. As a rough guide please allow yourself at least two hours for a clinic visit.

Additional Support

The Cleft Lip and Palate Association offers advice and support to individuals and families. Local representatives can be contacted through their head office on 020 7431 0033.

Cleft Lip and Palate Association – CLAPA Website

Changing Faces provides advice and support for children, adults and parents with a visible facial difference contact them Monday to Friday 10.00am to 4.00pm

Telephone: 0300 012 0275

Changing Faces Website