Cleft and speech

All children develop speech at different rates, so it can be hard to know at the early stages how they will be affected, if at all. Try not worry about your child’s speech when they are still young, and take things one week at a time. Your Cleft Team will monitor and treat your child’s speech as and when needed.

If your child is not very vocal or does not babble e.g., ‘mama’ ‘dada’, this could be an early sign that their speech is developing at a slower rate.

When babies do begin to babble and make sounds, listen out for ‘p’, ‘b’, ‘t’, and ‘d’ sounds e.g., ‘Puhs’, ‘Buhs’, ‘Tuhs’, as if they can make these sounds clearly, this is an indication that their palate can close against their throat as it should.

If your baby is making a lot of nasal sounds e.g., if you are hearing a lot of ‘uh uh uh’ and sounds produced at the back of the throat, this could mean they are struggling to push air out of the mouth and instead air is flowing from the nose during speech. This is nothing to panic about, as children all develop at different rates, but it could be a very early indicator that their palate can’t fully close against the back of their throat.

Your cleft team will monitor your child’s speech development and will recommend treatment if they have any concerns. They do not usually assess a child’s speech until they are at least 18 months old and have had their cleft palate repair operation.

This is the typical pattern of development of speech sounds, but it varies for each child:

The Royal College of Speech and Language Therapists (RCSLT) has much more information on typical speech development and the age at which children start making different sounds.

Having issues with speech can impact a child’s self-esteem if they are unable to be understood by others. This can lead to frustration and withdrawing from social situations.

It can also affect their ability to learn sounds when learning to read and write at school, and to participate in other lessons.

It is important to remember that many children with or without a cleft have speech issues, and it is not uncommon for children to attend speech and language therapy.

You will know your child best, so are more likely to notice if there are changes to their speech or things they struggle with. It can be handy to keep a note of these things to share with your child’s speech and language therapist.

It might also be that, because you’re used to how your child speaks, you can understand them just fine, while others may find it more difficult. This isn’t such an issue while they’re still very young, but it needs to be treated if they are to start school and interact with others confidently. If you notice that others sometimes find it difficult to understand your child’s speech, and you think this is because of their cleft, raise it with your Cleft Team.

Hearing issues

Children with a cleft palate are more likely to have hearing issues like Glue Ear. This may be fluctuating or long-term, and can develop at any time, though is more likely when they are under 8 years old.

Sometimes, a child’s speech problems can be made worse by (or be caused by) hearing issues, as they can’t hear themselves speak, or hear other people modelling the correct pronunciation of the words, and so can’t work to fix the issues themselves.

Your Cleft Team will regularly assess your child’s hearing and provide any treatment needed. However, as hearing issues can develop gradually, it’s also important for you to monitor your child’s hearing and note if there are any obvious changes e.g., they aren’t responding to you calling their name.

This will depend on your specific cleft team and how the kind of cleft your child has.

Usually, a child with a cleft will be assessed by a specialist speech and language therapist within the cleft team at:

• 18 months
• 3 years
• 5 years
• Again at 10 and 15 years

If there are any concerns noted with speech at any of these stages, they will be referred to speech and language therapy for further assessment and intervention.

These assessments might not take place if there are no noted concerns about your child’s speech, so if you have concerns, always let the cleft team know. You do not have to wait for an appointment or routine check-up to raise these concerns. A phone call with the specialists from the cleft team can go a long way and provide reassurance.

The cleft specialist speech and language therapist (SLT) with your cleft team will usually assess your child’s speech by informally observing them while they play. They may also use formal assessments to gather information about which speech sounds your child struggles with. This will again be play-based, but may involve, for example, asking your child to name objects in pictures the SLT shows them.

This will allow the SLT to gain an understanding of your child’s speech, language and communication abilities and this information will be used to plan future treatment, such as speech therapy, if it’s necessary.

Assessment by the speech and language therapist will depend on your child’s abilities, needs and attention skills.

It is likely that the SLT will ask you about the impact of your child’s speech. For example: do they become frustrated or upset, do others struggle to understand them, are there certain words or sounds they struggle to make?

They may also need to examine your child with a nasometer, a nasendoscopy, a videofluoroscopy; see below for more information on these.

A nasometer is a device which is worn as a headset with a small plate under the nose.

This allows the speech and language therapist to measure the amount of air leaving the nose during speech.

A nasendoscopy exam involves a small camera being passed through the nose so the back of the throat can be seen while a child is talking. An anaesthetic spray is usually used to numb the nose before inserting the camera.

This helps the SLT to understand how your child’s palate is moving when they talk.

This video explains what happens during a nasendoscopy.

A videofluroscopy is sometimes called a ‘talking x-ray’.

It involves a video x-ray being taken while your child is talking so that the SLT can see how the palate and tongue are moving during speech.

The Royal Victoria Infirmary in Newcastle and Tyne produced this video to help explain to children what will happen when they come in for a videofluoroscopy.

Speech and language therapists (SLTs) will have techniques to target specific sounds which a child may be struggling with. Sessions with a speech and language therapist will be different for each child and will be tailored to their goals, needs and interests.

The SLT will use play-based techniques to help a child to make speech sounds in a way which will be easier for others to understand.

An example is the ‘nose-holding‘ technique. This is where the SLT encourages a child to hold their nose when producing speech sounds. This will force air to come out the mouth during speech instead of through the nose. This will cause the speech to sound less nasal. After continuous practice and prompt the child should be able to force air to flow out of the mouth without having to physically hold their nose.

This video from the South West Cleft Service explains how ‘articulation’ therapy works to teach children to make sounds:

Some children need one or more extra operations to help with their speech development. This is often called ‘secondary speech surgery’.

This will only be offered if your child has an issue with their speech which can’t be improved by speech and language therapy alone.

Every child is different, so while an operation like this can make a huge positive difference for some, for others it may not have much of an impact.

The possible options will be discussed with you by the cleft team, and they will guide you in making the right decision for you and your child.

There are a number of different operations to help with different speech issues. These largely focus on improving how the palate moves and functions, and help to block excess air from going into the nose while still allowing normal breathing.

• Palate re-repair: The original cleft palate repair is opened, the muscles are realigned, and the palate is repaired once more.
• Pharyngoplasty: This focuses on the back of the throat. A sphincter pharyngoplasty focuses on building up the muscles at the back of the throat so the soft palate has a smaller gap to close. A pharyngeal flap could be used to help close the gap between the palate and the back of the throat.
• The palate can also be lengthened using a buccinator flap which will help the palate to close against the back of the throat.

If your Cleft Team thinks any of these operations may be needed, they will let you know. You can also read more about these operations on the North West, North Wales and Isle of Man Cleft Service website.

If your child has one of these operations, your Cleft Team will give you specific instructions on preparation and recovery. Your child will usually need a soft diet for 2-3 weeks after an operation like this. The inside of their mouth will be sore and swollen for a little while, and it will take some time before you’ll be able to tell if there has been any change in their speech.

Some adults born with a cleft choose to have operations like this to help with their speech when they’re older. However, your Cleft Team will usually recommend that an operation like this is done sooner rather than later. This is because it’s less disruptive to a child’s life, and it’ll be easier for them to ‘re-learn’ how to talk after the changes to their mouths, as they’re still learning to talk anyway.

The impact of any operations on speech with be different for each child. Your cleft team will talk to you (and your child if they’re old enough) about any potential side effects when these operations are being planned.

If an operation changes the shape of the mouth, or anything to do with how the mouth works, it may have an impact on speech. Changes to speech may not be obvious until a few weeks or months after an operation when the mouth has fully recovered and any swelling has gone down.

In your cleft team, all the cleft specialists involve with your child’s care will work together to give them the best possible outcome. This means your child’s surgeon will work with their speech and language therapist to plan for and manage any issues like this.

If you are worried about any changes to speech, or notice changes after an operation, talk to your cleft team.

Every child is unique, so the way their speech develops, the impact of their cleft, and how they respond to speech treatment, will be unique to them.

Sometimes, a child will have speech and language therapy, and, for a variety of reasons, there are little to no changes or improvements to their speech. But this doesn’t mean their speech will never change. It may be that your child does not have the attention and listening skills needed for speech and language therapy just yet, but this will likely change as they get older.

Children’s speech is constantly changing and developing, and it is also important to not give up hope. Just because your child cannot currently produce a certain speech sound, it doesn’t mean this will always be the case.

It is important to remember that many children, with or without a cleft, have issues with their speech. It is also important to avoid putting pressure on your child to produce ‘correct’ or ‘perfect’ speech and instead focus on making speech and language therapy tasks as fun and engaging as possible for them. Persistence and patience are key!

Learn more about how you can support your child’s speech and language therapy further down this page.

The key thing is to remember is to keep speech fun!

You do not want speech and language therapy to become a ‘task’ or a ‘chore’ that your child doesn’t enjoy as this can lead to them avoiding practicing their speech.

It is important not to put pressure on your child to produce certain sounds by a certain age, as this can make them reluctant to speak. Try to avoid over-correcting them, finishing their sentences or telling them to say certain words.

Remember to be encouraging and to celebrate their successes! When your child reaches a milestone or says a certain word or sound correctly, give them specific praise so they understand what they did right, and encourage them to repeat it.

See below for more tips on including SLT practice in your child’s daily life and play.

Listen to the sounds your baby is making when they babble and repeat these back to them.

CLAPA hosts ‘babble and play’ events with cleft specialist speech therapists to show parents and carers how they can support their baby’s speech developmeny through babbling.

The South West Cleft Service has made this video with advice for parents and carers of babies and young children born with a cleft palate.

• Repeat back correct sounds. If your child says a word or sound incorrectly, you can repeat the correct sound back to them. For example, if they say, “Look, there’s nana” instead of “dada“, you can reply, “Yes, there’s dada,” emphasising the correct sounds.
• Avoid ‘correcting’ their speech or directly pointing out the incorrect sounds when you do this, e.g. “No, not ‘nana’, say ‘dada’,” as this can make your child more self-conscious about speaking.
• Make exaggerated sounds when you talk. For example, stick out your tongue slightly when saying ‘tuh tuh tuh’ to show your child how they should move their mouth to produce the sound.
• Encourage your child to look at your mouth when you are producing a sound e.g., by holding a toy up to your face and saying, “t t t teddy says hi!”

Repetition is key! Try to include repeated sounds during your daily routine or playtime, and encourage them to look at your mouth while you’re making these sounds.

Use words and sounds they need to practice in songs and games. For example:

• Nursery rhymes like ‘baa baa black sheep’
• In the bath you could play with bubbles and say “Look at the b..b…b..bubbles!”

Your child will be able to listen, look and store these sounds ready for when they are able to produce the sounds themselves.

It’s important for children to hear, see and also feel the sounds they are struggling with, as this will help them to understand how they are made. For children born with a cleft palate, this can help them learn how to close off the back of their throat and stop air from coming through their nose.

You can do this by:

• blowing raspberries against their skin and showing how air is coming through your mouth
• playing by blowing a “p p p puff of air” against their hand
• put a bit of tissue on your hand and saying “up up up the paper goes” while blowing it off your hand with the ‘p’ sounds.

Special songs

Speech and Language Therapists from the Spires Cleft Team have developed two songs to encourage children born with a cleft palate to blow air through their mouths. These songs are ideal for families to sing at home, or can be shared with a child’s preschool setting as a small group activity to be enjoyed by everyone.

The idea of these songs is to keep the blowing very soft and gentle and to talk to children about how we use stretched lips and how the air comes out of our mouths. When singing this with children, you can model gentle nose-holding while blowing and invite the children to copy the action.

Five Little Leaves

Download song (MP3)

Download song sheet (PDF)

Little Flower Clocks (Dandelion song)

Download song (MP3)

Download song sheet (PDF)

If you can make speech practice feel fun and playful, rather than a task or a chore, your child is more likely to engage and feel positively about it.

• Avoid ‘over-correcting‘ their speech or pointing out when they make mistakes, e.g. “Don’t say ‘nanny’, say ‘daddy’.” Instead, just reply to them using the correct sounds, e.g. “Yes, there’s daddy.”
• Encourage them to make certain sounds by including the sounds in play (for example, by asking what something is called), rather than directly asking them ‘can you say…?’
• Try not to anticipate what they might say or finish their sentences. You can, however, expand on what they say once they’re finished speaking. For example, if they say “daddy car”, you can respond with “yes, daddy is in the car.”

It’s important that your child feels positive about their speech and language development, so remember to be encouraging and to celebrate their successes! When your child reaches a milestone or says a certain word or sound correctly, give them specific praise so they understand what they did right, and encourage them to repeat it.

Teaching your child to sign as well as talk can help boost their early communication skills.

Makaton signs and ‘baby signs’ can be a good place to start. CLAPA has regular ‘baby signing’ courses available free-of-charge for UK families, and there are many educational resources on sites like YouTube, such as Singing Hands.

Once your child begins nursery or school it is important that the staff are aware of their cleft and the impact this has on their speech and/or hearing. This will allow them to make adaptations and considerations for your child in the classroom e.g., making sure they are sat near the front of the classroom so they can hear the teacher.

If your child is known to speech and language therapy, they will likely be in contact with the school/nursery (although all health boards work differently) and they can provide information about speech sounds they may struggle with when learning to read and write.

Simple pieces of advice can help family members and friends to support your child’s speech and language development. Encourage them to speak with your child and use the same techniques and tips provided above.

Make sure they are aware of any potential speech or hearing problems so that they are able to support your child.

The important thing for anyone communicating with a child with cleft is to be patient and consider how their speech or hearing problems might be impacting them.

This is, unfortunately, a bit of a ‘postcode lottery’. Some areas of the UK are able to provide speech and language therapy (SLT) services to children almost immediately after a referral. Others have to put children on long waiting lists or may not be able to see them at all.

This sometimes depends on how urgent the need for SLT is judged to be. Naturally, children whose speech is completely unintelligible, or children who are nonverbal (such as some children with autism spectrum disorders), will be a higher priority for treatment than children who might only have difficulties pronouncing certain sounds.

In some areas, local SLT services are simply overstretched and cannot accommodate all the referrals being made, even if the need is urgent. You should be able to find out what place your child has on the waiting list and how long they can expect to wait by asking your local SLT service.

Tell your cleft team that you haven’t been able to get SLT treatment locally. They may be able to refer you elsewhere, or at the very least they should be able to give you a report of their recommendations. This will help if you choose to take things any further, as it is proof that your child needs treatment which they are not getting.

Tell them if you are planning to make a complaint about local waiting lists or treatment availability, as they may be able to advise on specific wording to use to make it more effective.

Make a case for your child by writing to your local SLT provider and explaining why your child is entitled to treatment. If you don’t know who your local SLT provider is, contact your local Integrated Care Board and ask for information on who you should speak to.

It can be a good idea to speak to the service provider directly over the phone or in person, as they may be able to address your concerns (or at least give you a satisfactory explanation) without you having to go through the complaints procedure. This is called a ‘local resolution’.

However, if you don’t feel comfortable doing this, or if you tried and your problem wasn’t resolved, you can still follow the complaints procedure.

If your child is on a long waiting list or you have been told they cannot receive any care, and you think this will badly affect their development, you can make a case for your child by following the NHS’s complaints procedure.

Remember to keep records of all letters and emails that you send and receive, and keep a note of times, dates and anything discussed over the phone.

Even though this might be an emotional issue for you, try to write your complaint out in a detached way that explains your problem, provides evidence, and lays out the solution or outcome you’re hoping for, even if this outcome is just a proper explanation of why this has happened.

Help with making a complaint

Go through PALS (Patient Advice and Liaison Service): Your local hospital or service provider should have a PALS Office where you can talk about any issues you’re having and seek advice. You can find a list of PALS offices on the NHS Choices website. PALS can also put you in touch with the NHS Complaints Independent Advocacy Service which supports people who want to make a complaint.

Citizens Advice Bureau: This service provides practical advice for all sorts of issues, from claiming benefits to complaining about a poor service. They can advise you if there are any other courses of action you can take, and can help you understand what the law says about your situation.

Extra support is available for children with special educational needs and disabilities (SEND).

The specifics of what is available and what the services are called will be different depending on where you are in the UK.

If your child attends school, talk to them about your concerns. They may have the resources to have a local SLT visit the school and work with a number of patients at a time, or just with your child. They may also be able to advise on how best to access these services outside of school, for example getting a statement of special educational needs for your child. Children with a statement of SEN (or an Individualised Education Plan (IEP) in Scotland) may be seen faster, and in some areas with oversubscribed SLT services this may be the only way to get seen by a local provider.