Treatment

Use the links on the left to find out more about each stage in the treatment timeline, or scroll down for a general overview of what you can expect as your child grows up.

Cleft Lip and Palate Treatment Timeline

This is a summary of services commissioned by NHS England based on the full Service Specification.

It is designed to help you understand how everything in the treatment pathway for cleft fits together, and what you might expect at each stage of your or your child’s life. It is important to remember, however, that every child is different and that this is a general guide only. What is available may differ from area to area, and specifications for Scotland and Northern Ireland will be slightly different.

To find out more about the Cleft Services in the UK, visit our NHS Cleft Services page.

The Outcomes of the Service

An ‘outcome’ is simply the final result of a treatment. For example, one outcome of having braces might be that you’re happier with how your teeth look. When we talk about the ‘outcomes of the service’, we mean the end result of all cleft lip and palate treatment on the NHS, from diagnosis right through to adulthood.

The aim of treatment of cleft lip and/or palate (sometimes called ‘CLP’ or just ‘cleft’ for short) is to make sure all children and adults can cope well socially and are not disadvantaged as they go through life.

The principles of good care for CLP say that those who have a cleft lip repair should have a good aesthetic (how good it looks) and functional (how well it works) outcome. Those who have a cleft palate repair should have good speech and normal hearing. Both should have the best possible development of their face and teeth, including good jaw growth.

Anonymous data on these outcomes is sent to a national database called the Craniofacial Anomalies Register (CRANE), and a report is published every year to look at how well the Cleft Service is delivering these outcomes.

The Treatment Pathway

Every cleft is unique, just like every child, and everyone going through the care pathway will have different needs which will be handled by the individual cleft teams. If you have a question about your or your child’s care, talk to your Cleft Team in the first instance.

The care pathway as laid out here is based on the Service Specification for cleft care by NHS England, so there will be differences around the UK and not all parts will apply to every individual moving through the pathway. As well as specialist cleft care, a child’s health and progress will be monitored by the usual Primary Care paediatric services (e.g. vaccinations) which we have not included here.

For certain services, such as hearing, there may be variations in the pathway across units.

Please note that since these age ranges are based on the NHS Service Specification, they do not line up exactly with CLAPA’s information, which is based on life stages. Whilst we have made every effort to ensure the information on this page is accurate, it should only be taken as a general guide and should never replace the information given to you by your Cleft Team.

Jump To:

Antenatal (before birth) Care

0 -3 Months

3-6 Months

6 – 12 Months

18 Months – 5 Years

6 – 12 Years

13 – 20 Years

21+ Years

H-newborn

Antenatal (before birth) Care

Cleft Unit

Contact by Cleft Team within 24 hours of referral, usually by the Clinical Nurse Specialist (CNS).

Parents will be offered a visit from the CNS at an appropriate time and place.

Local Care – Obstetric Unit or private Ultrasound Centre

Diagnosis of cleft lip at 20-week anomaly scan, confirmed by specialist if necessary.

Referral to local Cleft Centre within 24 hours of diagnosis if agreed with prospective parents .

3D/4D ‘bonding’ scans are available for free or at a discount in certain areas with a referral from your Cleft Centre.

CLAPA’s Services

Information on birth and diagnosis

Happy Faces Groups for new and expectant parents

Parent Contacts

Facebook Group for parents

Photo Gallery of before and after surgery photos

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0 – 3 Months

Cleft Unit

Visit from Cleft Nurse within 48 hours of birth, and ongoing support, assessment and advice following discharge home.

Specialist feeding assessment, advice and support in the use of special feeding bottles or a nasogastric (NG) feeding tube if needed.

Preventative dental advice and treatment in consultation with Cleft Unit. The aim is for the child to have dental health just as good as other local children without a cleft

Newborn Hearing screen for all babies. Referral for ongoing hearing assessment and management for babies born with a cleft palate.

Referral to Ear, Nose & Throat (ENT) and/or audiology if needed

Clinical Psychology Support – parents will have access to a psychologist, counsellor or nurse who can help them cope with any feelings or concerns they have related to their child’s cleft. This is available at all points along the care pathway.

Local Cleft Clinic

Monitoring of child for signs of syndromes associated with cleft.

Genetic counselling will be offered to parents to help them understand why they had a child with a cleft and what the chances are of this happening again. This is available at any time, including when the child is grown up and considering a family of their own.

Local Care

Diagnosis of cleft palate within 24 hours of birth.

Contact Cleft Unit within 24 hours of birth and/or diagnosis.

Dental Health education and advice (in liaison with the Cleft Units)

CLAPA’s Services

Welcome Pack – a set of specialist feeding bottles and teats as well as information is sent out to parents when required. These bottles and teats are also available to buy online or over the phone.

Information on Feeding and Repair Surgeries

Happy Faces Groups for new and expectant parents

Parent Contacts

Facebook Group for parents

Photo Gallery of before and after surgery photos

SONY DSC
SONY DSC

3-6 Months

Cleft Unit

Lip Repair Surgery

The lip repair usually takes place when a child is at least 3 months old.

The child will be assessed before any surgeries by the multidisciplinary team to ensure they are fit enough to have the surgery and also to help monitor the ways in which the child will change afterwards. Parents will be able to ask any questions about their child’s care at this stage.

Timings of surgeries may vary, and the surgery date can be pushed back for a number of reasons – talk to the Team if you have concerns.

The Cleft Team will be able to help parents prepare for surgery, as well as give advice and support regarding aftercare.

Occasionally, further adjustment surgery is needed as the child grows up. This will take place as and when appropriate.

CLAPA’s Services

Information on Repair Surgeries

Happy Faces Groups for new and expectant parents

Parent Contacts

Facebook Group for parents

Photo Gallery of before and after surgery photos

H-6-12months

6-12 Months

Cleft Unit

Palate Repair Surgery

The palate repair usually takes place between 6-12 months.

The child will be assessed before any surgeries by the multidisciplinary team to ensure they are fit enough to have the surgery and also to help monitor the ways in which the child will change afterwards. Parents will be able to ask any questions about their child’s care at this stage.

Timings of surgeries may vary, and the surgery date can be pushed back for a number of reasons – talk to the Team if you have concerns.

The Cleft Team will be able to help parents prepare for surgery, as well as give advice and support regarding aftercare.

Occasionally, further adjustment surgery is needed as the child grows up. This will take place as and when appropriate.

Local Cleft Clinic

Hearing test at 7-10 months for babies with a cleft palate, as well as annual hearing tests up to 5 years or as long as is required. Treatment as necessary

CLAPA’s Services

Information on Repair Surgeries

Happy Faces Groups for new and expectant parents

Parent Contacts

Facebook Group for parents

Photo Gallery of before and after surgery photos

H-Baby01

18 Months – 5 Years

Cleft Unit

Speech and Language Therapy Assessment – This usually takes place at around 18 months. Treatment will be offered if necessary, but the need may not become apparent until the child is older.

A further assessment takes place at around 3 years old, and treatment is recommended if it’s needed. Assessments for speech problems at this and later stages may involve a nasendoscopy or videofluroscopy.

Psychological Support for families if requested prior to school entry.

Paediatric Dentistry advice and/or treatment if necessary. This is available along the entire treatment pathway.

Full assessment by Cleft Team – a child with a cleft should receive a full assessment by all specialists in the cleft team at age 5, to ensure that any ongoing or emerging issues are being dealt with appropriately.

Surgery to revise lip, or speech (velopharyngeal) surgery if necessary. These are available throughout the entire pathway when needed.

Local Cleft Clinic

Audiology assessment of children with a cleft palate at regular intervals up to and including 5 years (5 year assessment may be at Cleft Unit).

ENT assessment if necessary

Local Care

Speech and Language Therapy – This will be provided by local therapists in consultation with the specialist from the Cleft Team. The aim is for all children to have good quality, intelligible (understandable) speech by age 5-6.

CLAPA’s Services

Happy Faces Groups for new and expectant parents

Parent Contacts

Facebook Group for parents

A family wearing CLAPA t - shirts
A family of CLAPA supporters!

6 – 12 Years

Cleft Unit

Orthodontic Assessment and Treatment – An orthodontist will monitor the position of the 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 checked and managed for children with cleft palate.

Psychological Support for families if requested prior to school transfer, or to help with any issues such as bullying or self-confidence.

Full assessment by Cleft Team at age 10, including for orthodontic treatment.

Alveolar Bone Graft (ABG) Assessment and Surgery

This involves taking a piece of bone from the hip and placing it in the gap left by the cleft so adult teeth can come through properly. Between the ages of 7 and 9, a child will be assessed by the team’s orthodontist, paediatric dentist and the surgeon responsible for ABG surgery to see if it is necessary.

If it is necessary, the preparation for the surgery as well as the surgery itself will usually be completed by 12 years of age, with a follow-up 6 months later.

Local Cleft Clinic

Ongoing management of speech and hearing issues

Local Care

Dental and Orthodontic treatment

Speech and Language Therapy from local therapists in conjunction with the specialist from the Cleft Team

CLAPA’s Services

Residential Weekends for 9-15 Year Olds

Private Facebook Group for under 17s

Children and Young People’s Council (CYPC) for 9-17 Year Olds

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13 – 20 Years

Cleft Unit

Offer of genetic counselling for patients interested in the causes of their cleft and how likely they are to pass it on to any children they have (‘hereditability’)

Full assessment by Cleft Team at ages 15 and 20 (if necessary).

Discharge from Child Cleft Services between ages 16-20, including final discharge appointment. Patients may be referred on to adult services to continue their treatment if necessary, or they can get a referral later in life from their GP or dentist.

Orthognathic Assessment and Surgery

Orthognathic surgery involves re-aligning the jaws to change the appearance of a person’s profile. This is usually offered to patients who have an underbite, and is usually completed after their face has finished growing at 16-18 years old.

There is a lot of planning, assessment and preparation involved with this surgery, including orthodontic care before and after. The Cleft Unit can offer more information.

Surgery as Required

Surgery may be required or requested for a number of different reasons, e.g. rhinoplasty (surgery to change the shape of the nose), dental surgery, lip revision, speech revision, palatal fistulae closure (closing small holes in the palate), etc.

Local Cleft Clinic

Ongoing management of speech and hearing issues

Paediatric and restorative dental care in liaison with Cleft Unit

Local Care

Ongoing orthodontic treatment

CLAPA’s Services

Residential Weekends for 9-15 Year Olds

Private Facebook Group for under 17s with a cleft

Children and Young People’s Council (CYPC) for 9-17 Year Olds

Adult Voices Council for 18+ Year Olds

‘Adult Voices’ Facebook Group for over 18s with a cleft

Peer Contacts

Information aimed at teenagers with a cleft

Information aimed at adults with a cleft

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21+ Years

Treatment as required

Adults may re-enter the cleft service at any time for a consultation about any aspect of their care, including psychological support, genetic counselling and specialist dental treatment, which is all available on the NHS if it is deemed necessary.

Adults can get a referral to the Cleft Unit from their GP or Dentist.

CLAPA’s Services

‘Adult Voices’ Facebook Group for over 18s with a cleft

Adult Voices Council for 18+ Year Olds

Peer Contacts

Parent Contacts who have a cleft themselves

Information aimed at adults with a cleft

 


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Published: November 2015

Next Review: February 2017

Have a comment or question about the information in this page? Please contact Communications & Information Manager Anna Martindale at anna.martindale@clapa.com or 020 7833 4883.

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