• Your Cleft Nurse Specialist with the Cleft Team will talk you through what to expect. If possible, they will arrange a home visit with you.
• You may be offered a 3D or 4D ‘bonding’ scan so you can see your baby’s face before they are born.
• You will usually be invited to meet the full Cleft Team who will be treating your baby and given the chance to ask any questions.
• Your Cleft Nurse Specialist can talk to your midwife or obstetrics team if they have any concerns about your birth plan following the cleft diagnosis.
• The Clinical Psychology team with your Cleft Team can support you and your family to work through your feelings around the diagnosis and help you feel ready for what’s coming next.

About antenatal diagnosis

• Information on antenatal diagnosis, birth, and beyond.
• Events for new and expectant parents and carers, including a regular Antenatal Support Group
• Trained ‘Parent Supporter’ volunteers who can help you to talk through your feelings and share their own experiences
• Free Counselling Service available with little to no waiting list
• Photo gallery of babies and children at all stages of their cleft journey
• Parent Support Group on Facebook with over 15k parents and carers throughout the UK

• The Cleft Nurse Specialist will carry out a feeding assessment to check your baby’s feeding needs. They will tell you if you need specialist bottles and will show you how to use them. Your Cleft Nurse Specialist will support you through any feeding issues you have once you head home.
• In some cases, babies might need to use a nasogastric tube (NG tube) to help them feed. This is a thin tube passed through the nose and into the stomach.
• Your baby will have all the usual newborn checks, including a hearing screen. A cleft palate can affect hearing, so if necessary your Cleft Team will talk to you about managing this.
• Sometimes a cleft is caused by a syndrome or other condition. Your Cleft Team will monitor your baby for any signs of common syndromes or conditions and let you know if further testing is needed.
• The Clinical Psychology team with your Cleft Team can support you and your family to work through any difficult feelings you might have after your child’s birth. This is available throughout the whole treatment pathway.

More about postnatal diagnosis

• Information on postnatal diagnosis, cleft repair operations, and more.
• Events for new parents and carers, including regular support groups on topics like ‘surgery’ and ‘feeding’.
• Trained ‘Parent Supporter’ volunteers who can help you to talk through your feelings and share their own experiences
• Free Counselling Service available with little to no waiting list.
• Photo gallery of babies and children at all stages of their cleft journey
• Parent Support Group on Facebook with over 15k parents and carers throughout the UK

• Your Cleft Team will explain things to you in detail at your pre-operative appointment. They will be happy to answer any questions you may have, and it’s a good idea to write these down beforehand.
• Your baby will be assessed to make sure they are fit and healthy enough for the operation.
• You will be given expert advice on feeding and looking after your baby after their operation.
• A cleft can make it more difficult to keep your baby’s teeth clean. You’ll be given advice to help you make sure your baby’s teeth and gums are kept strong and healthy as they grow up.

More about cleft repair operations

• Information on cleft repair operations and more.
• Events for new parents and carers, including regular support groups on topics like ‘surgery’ and ‘feeding’.
• Trained ‘Parent Supporter’ volunteers who can help you to talk through your feelings and share their own experiences
• Free Counselling Service available with little to no waiting list.
• Photo gallery of babies and children at all stages of their cleft journey
• Parent Support Group on Facebook with over 15k parents and carers throughout the UK

• Your Cleft Team will explain things to you in detail at your pre-operative appointment. They will be happy to answer any questions you may have, and it’s a good idea to write these down beforehand.
• Your baby will be assessed to make sure they are fit and healthy enough for the operation.
• You will be given expert advice on feeding and looking after your baby after their operation.
• An extra hearing test will be offered at 7-10 months for babies with a cleft palate. Your child with then have annual hearing tests for at least five years.

More about cleft repair operations

• Information on cleft repair operations and more.
• Events for new parents and carers, including regular support groups on topics like ‘surgery’ and ‘feeding’.
• Trained ‘Parent Supporter’ volunteers who can help you to talk through your feelings and share their own experiences
• Free Counselling Service available with little to no waiting list.
• Parent Support Group on Facebook with over 15k parents and carers throughout the UK

You will probably see less of your Cleft Team than you did for the first 18 months of your child’s life. You don’t need to wait for scheduled check ups to ask questions or raise concerns; you can get in touch with them at any time for expert advice and information.

• Support with teeth
  • A cleft can make it harder to keep your child’s teeth clean. Healthy teeth and gums are important for everyone, but they’re especially important for children born with a cleft who might need orthodontic work when they grow up.
  • The paediatric dentist with your Cleft Team will give you expert advice on keeping your child’s teeth clean and free from cavities.
  • Your child should have regular appointments with a local dentist to make sure any issues are dealt with as soon as possible.
• Support with speech
  • When your child is around 18 months old, they will have their speech and language development assessed by the Cleft Team. Speech and Language Therapy (SLT) might be offered at this point, or the team may take a ‘wait and see’ approach.
  • Another speech assessment will happen at around three years old, and Speech and Language Therapy (SLT) will be offered if needed.
  • Speech and Language Therapy (SLT) is usually provided by local practitioners in consultation with your Cleft Team. They will work together to help ensure your child can be easily understood by the time they start school.
  • Some children will need one or more operations to help with their speech at this time.
• Support with hearing
  • A cleft palate can affect hearing and make issues like Glue Ear more likely. Because these can come and go, your child will need regular hearing assessments. You should also alert the Cleft Team or your local audiologist if you suspect they are having any hearing issues.
  • Your child may need grommets or hearing aids to help with their hearing. The Cleft Team will talk to you about these options and together you can decide which is best for your child and your family. If grommets are needed, these are usually put in during another operation to reduce the number of times your child has general anaesthetic.
• Five-year assessment
  • Your child will have a full assessment with the Cleft Team when they are five years old. At this appointment, they will check how your child is developing and make sure any new or existing issues are being dealt with appropriately.

• Information on speech, hearing, dental health, operations and more.
• Events for new parents and carers, including regular support groups on topics like ‘surgery’ and ‘feeding’.
• Trained ‘Parent Supporter’ volunteers who can help you to talk through your feelings and share their own experiences
• Free Counselling Service available with little to no waiting list.
• Parent Support Group on Facebook with over 15k parents and carers throughout the UK

• A cleft can make it harder to keep teeth clean. Your child needs to have regular appointments and cleanings with a local dentist to ensure their teeth and gums are strong and healthy.
• An orthodontist will monitor the position of your child’s teeth, including their adult teeth when they start to come through. Treatment may be needed to correct their position, which often includes fitting braces.
• Speech and hearing will be regularly checked for children born with a cleft palate and treatment provided. If your child needs ongoing Speech and Language Therapy (SLT), this will often be provided locally, or even through your child’s school.
• Psychological Support for families is available before school transitions or to help with any issues such as bullying or self-confidence.
• Full assessment by Cleft Team at age 10, including for orthodontic treatment.

• Information on the cleft treatment pathway for parents and families, as well as for young people and teenagers
• Cleft Youth annual magazine
• Camp CLAPA weekends for 8-12-year-olds
• Online events for parents and families, as well as young people
• Children and Young People’s Council
• CLAPA Companions Pen Pals
• Cleft++ Mentoring

Support for parents and families

Support for children

• Your Cleft Team will advise if they think your child needs this operation. They may need to have dental x-rays and other assessments
• This operation happens after the baby teeth in the cleft area are lost, but before the adult teeth come through, usually around 8-12 years old. The timing and other details will be unique to each child.
• Your child will need regular appointments with the Orthodontist with the Cleft Team to prepare their teeth and mouth for the operation.
• This operation involves taking some bone from inside the hip and grafting it into the gap left by their cleft. This gives support for their adult teeth and makes the upper jaw more stable. It will also help to make sure their teeth in this area can be moved into a better position by their Orthodontist.

• Information on the Alveolar Bone Graft aimed at parents/carers as well as young people.
• Cleft Youth annual magazine
• Camp CLAPA weekends for 8-12-year-olds
• Online events for parents and families, as well as young people
• Children and Young People’s Council
• CLAPA Companions Pen Pals
• Cleft++ Mentoring

Support for parents and families

Support for children

• Ongoing orthodontic treatment as needed (which might include braces) to make sure your child’s teeth are in the right place, as well as dental care to keep your child’s teeth and gums healthy.
• Ongoing treatment for speech and hearing issues as needed.
• Depending on your child’s needs, extra operations might be offered to help with concerns with breathing, speaking, teeth placement, appearance, and more. These will depend on how your child’s face is growing, what might be bothering them, and other factors.
• Psychological support is available for families and young people to help with concerns related to their cleft.

Appointments with the full Cleft Team

• Your child may have an assessment by the full Cleft Team at around 15 years old. Unlike previous appointments where the Cleft Team may have spoken to parents/carers, in this appointment they will want to speak mostly to your child. Some young people can find it intimidating to talk to so many medical professionals at once. You can help them prepare for the appointment by explaining who the different medical professionals are and writing down any questions they want to ask in advance.
• Your Cleft Team will talk to you and your child about what to expect as they approach adulthood, including when they expect your child to be discharged from the Cleft Team’s care.

• Information on cleft treatment aimed at young people.
• Cleft Youth annual magazine
• Camp CLAPA weekends for 9-15-year-olds
• Online events for parents and families, as well as young people
• Children and Young People’s Council
• CLAPA Companions Pen Pals
• Cleft++ Mentoring

More support for teenagers and young people

Operation to realign the jaws(‘osteotomy’ or ‘orthognathic surgery’)

• If your child has an underbite (where their bottom jaw comes out further than their top jaw), they may be offered an operation to help with this.
• This operation can ‘realign’ the upper and lower jaws and help with someone’s ‘bite’ when regular orthodontic work (like braces) can’t do this. It can also change the shape of the face, especially if your child is concerned about having a ‘flat’ profile.
• This will only be considered after their face has stopped growing, usually at 16-18 years old, and it can be performed later in adulthood if preferred.
• This is a major operation which involves a lot of planning, assessment, preparation, and a long recovery time. If your child is offered this operation, the Cleft Team will explain in detail what will happen and what is required so they can make an informed decision.

Other operations

Other operations might be required or requested for many different reasons. These might include:

• Changing the shape of the nose to help with appearance and breathing concerns (‘rhinoplasty’)
• Changing the position of teeth or dealing with dental issues
• Changing the shape of the upper lip or changing the appearance of a lip scar (‘lip revision’)
• Changing the shape or position of the palate to help with speech, or closing any small holes that may have opened in the palate (palatal fistulae)

The Cleft Team will talk to your child during check-ups to make sure they are aware of any concerns your child has and will recommend treatment as appropriate. They should also explain if any operations need to be done soon or if your child can wait until they are older.

• Information on cleft treatment aimed at young people and at adults born with a cleft.
• Cleft Youth annual magazine
• Online events for young people and adults
• Children and Young People’s Council
• CLAPA Companions Pen Pals
• Cleft++ Mentoring

More support for teenagers and young people

More support for adults

If adult patients have been discharged from the Cleft Team, they will usually need to get a referral from their GP or dentist to access the Cleft Team again.

Cleft treatment in adulthood might include:

• Psychological support for issues related to their cleft
• Specialist dental and orthodontic care
• Additional operations to help with concerns around eating, breathing, speaking, appearance, and more
• Genetic testing to understand the causes of their cleft and the chances of them passing it on to any children

• Online events
• Facebook support group
• Peer Support Service
• Adults Connected by Cleft annual conference
• Information aimed at adults born with a cleft
• Opportunities to volunteer with CLAPA and get involved with cleft research

More support for adults