Cleft palate
Cleft lip is a term used to describe a notch, opening or separation in the upper lip. Cleft palate describes an opening or separation in the roof of the mouth.
Cleft lip and palate are common and affect about one baby in every 700 births. The extent of the clefts and how much they impact children varies.
Cleft lip and palate can each occur alone or together. Of the babies born with cleft lip or palate:
- 45% have a cleft palate
- 24% have a cleft lip
- 31% have both a cleft lip and palate
Children who were born with a cleft lip alone are not normally at a greater risk of long-term deafness than children without a cleft lip. However, children with cleft palate or cleft lip and palate are more likely to have hearing loss.
Causes of cleft lip or palate
We all start out life with a cleft lip and palate. During early pregnancy these clefts normally fuse together. The exact reasons for isolated cleft lip or palate are unclear. It’s usually a random, one-off event.
Sometimes cleft lip or palate can be seen during routine antenatal scans. Sometimes they are not known about until birth. If your child has a cleft clip or palate, you’ll be referred to a specialist regional cleft lip and palate service.
A team of professionals will be involved in the care and treatment of your child. This team may include:
- a specialist cleft nurse
- an audiovestibular (hearing and balance) physician
- an ear, nose and throat (ENT) surgeon
- a maxillofacial (head, neck, face, jaws) surgeon
- a plastic surgeon
- a speech and language therapist
- an orthodontist
- an audiologist
- a psychologist
- a paediatrician
The team will also have access to a geneticist and other professionals who may need to be involved in the overall care of your child. The team will discuss the treatments your child will need with you. You can work with the team to develop a care plan together.
Cleft palate and deafness
As part of your child’s care plan, it’s important that they have their hearing assessed. This may be done at the regional centre for cleft palate or at your local ear, nose and throat (ENT) and audiology service.
Hearing tests will normally be done routinely shortly after birth. Further hearing tests should be done at least once a year during the first 3 years, again around the time your child starts school, and at ages 5 and 10 years.
Glue ear
Glue ear (also known as otitis media with effusion or OME) is a common childhood condition which causes conductive hearing loss. It happens when the middle ear becomes filled with sticky fluid.
Most children who have glue ear who do not have a cleft palate grow out of it by about the age of 8. Children with cleft palate often have glue ear for longer because they have differently structured eustachian tubes and their muscles may not work as well.
Almost all children with cleft palate start experiencing glue ear before the age of 1 and continue to have it until the age of 10 or even older.
Sensorineural deafness
Most children with cleft palate do not have sensorineural deafness. However, there are some syndromes which can cause cleft palate and sensorineural deafness, such as Treacher Collins syndrome.
Mixed deafness is when children who have conductive deafness, such as glue ear, also have sensorineural deafness. If your child has sensorineural deafness and cleft palate, it’s important that they have regular hearing tests to check whether glue ear is affecting their hearing.
Learn about the different types of hearing loss and deafness.
'Understanding your child's hearing tests'
Order or download our guide ‘Understanding your child’s hearing tests’ to learn about the different types of hearing tests and hearing loss.
Ear infections and cleft palate
Children with a cleft palate may be more prone to middle ear infections. This is caused by a combination of factors that can encourage bacterial growth in the middle ear. Ear infections can occur with or without glue ear.
If you notice discharge (leaking) coming from your child’s ears, you should see your GP, who may prescribe oral antibiotics or antibiotic drops. Any prolonged discharge from the ear should be assessed by your ear, nose and throat (ENT) doctor.
Swimming and ear infections
Some children seem to get ear infections triggered by swimming. Most doctors feel it’s important for children to learn to swim and enjoy swimming rather than worry about possible infection. If your doctor is happy for your child to swim, try to stop dirty water entering your child’s mouth or being swallowed. Avoid swimming in lakes or non-chlorinated pools as the water usually has a high bacteria count.
Hearing aids and implants
Lots of children with cleft palate benefit from using hearing aids. The type of hearing aid that will be useful for your child will depend on the type and level of deafness they have and whether the outer ear is fully formed.
Hearing aids
A hearing aid sits on the top of the pinna (the outside part of the ear) and is connected to an earmould that is specially made to fit in the child’s ear. Children who have a syndrome associated with a cleft palate may have a very small pinna (known as microtia) that can make it difficult to keep a behind-the-ear hearing aid in place. Smaller ear canals can sometimes make it difficult to make well-fitting earmoulds.
Narrow ear canals can cause sound from a behind-the-ear hearing aid to bounce back off the wall of the ear canal, causing whistling or ‘feedback’ from the hearing aids. If your child has any of these problems, talk to their audiologist about possible solutions.
Children who have conductive hearing loss and have problems wearing behind-the-ear hearing aids may benefit from a different type of hearing device called a bone conduction hearing aid.
Bone conduction hearing aids
Bone conduction hearing aids use a vibrating pad that allows sound to be conducted through the bone rather than through the middle ear. They’re worn on a headband with the vibrator behind the ear, resting on the mastoid bone (part of the skull behind the ear).
Children with permanent conductive hearing loss who find a bone conduction hearing aid effective may also be suitable for a bone anchored hearing implant (commonly known as BAHAs).
Cochlear implants
Cochlear implants can be useful for children who have severe to profound sensorineural deafness and cannot hear the full range of speech sounds with hearing aids.
Grommet surgery
Grommets are tiny plastic tubes, inserted into the ear drum, which help air to circulate in the middle ear to prevent fluid from building up.
Your surgeon may recommend putting in grommets at the same time as the surgery to repair the cleft palate.
In older children, grommets may be offered if the glue ear has not cleared up after the palate repair.
Children who have a cleft palate are much more likely to have recurring glue ear after the grommets have come out. It is possible to put in grommets up to 3 times. However, repeated grommet surgeries increase the risk of complications. This is because every time a grommet is put in the eardrum is punctured, and every time one falls out it leaves a tiny scar.
'Harvey gets grommets'
In our children's comic, Harvey has glue ear and goes into hospital to have grommet surgery. You can order or download the comic to prepare your child for grommet surgery.
Syndromes associated with deafness
Most children with a cleft palate or cleft lip and palate have no other medical problems associated with it. However, cleft lip and palate occurs in more than 400 syndromes. A syndrome is a collection of signs or symptoms that commonly occur together, which doctors recognise as being related.
Syndromes may be caused by changes to genes, known as mutations, which are inherited (passed on) from one or both parents to the child. Sometimes the change in the gene happens in the child for the first time. This is known as a new or spontaneous mutation.
About 30% of children born with cleft lip or palate have a syndrome. Here is a list of the most common syndromes and where you can go for more information and support.
- Van der Woude syndrome
Get support for Van der Woude syndrome from the Cleft Lip and Palate Association. - Pierre Robin Sequence, also known as Pierre Robin syndrome or PRS
Get support for Pierre Robin Sequence from the Cleft Lip and Palate Association. - 22q11.2 deletion syndrome, also known as DiGeorge syndrome or Velocardiofacial syndrome
Get support from Max Appeal. - Stickler syndrome
Get support from Stickler Syndrome UK. - Down’s syndrome
Get support from the Down’s Syndrome Association or Down Syndrome UK. - CHARGE syndrome
Get support from the CHARGE Family Support Group. - Hemifacial microsomia, also known as Goldenhar syndrome
Get support from Goldenhar UK. - Treacher Collins syndrome
Get support from the Treacher Collins Family Support Group Facebook page. - Kabuki syndrome
Get support from Kabuki UK.
We are grateful to Mr Raouf Chorbachi, Consultant Audiovestibular Physician with Great Ormond Street Hospital for Children NHS Trust and North Thames Regional Specialist Cleft Lip and Palate service for his guidance in preparing this webpage.
Full references for this webpage are available by emailing
informationteam@ndcs.org.uk