In this section, the term cleft refers to a cleft lip, cleft palate, or a cleft lip and palate. Specific types of cleft are only referred to when necessary.
Cleft clinics and treatment teams
In England, all children born with a cleft are referred to a specialist cleft clinic. Specialist cleft clinics are dedicated medical centres that provide ongoing support to children and parents.
The cleft treatment team is made up of healthcare professionals from different specialist backgrounds who work closely together. The team includes:
- a specialist cleft nurse, who will provide initial advice about feeding and act as your first point of contact
- a cleft surgeon, who will carry out the repair of the cleft
- a paediatrician, a doctor who specialises in treating children
- an audiologist and an ear, nose and throat (ENT) surgeon, who will both assess and treat hearing conditions
- a speech and language therapist, who will assess and treat speech problems
- a paediatric (children's) dentist, who will help prevent dental decay
- an orthodontist, who specialises in dental and jaw development and will straighten the teeth with braces
- a restorative dentist, who specialises in replacing missing teeth
- a psychologist
The core members of the team will be available at the outpatient cleft clinic appointments to give you advice and answer any questions you may have.
Care plan timetable
Most children with clefts will receive the same type of care plan tailored to meet their individual needs. A typical care plan timetable is described below:
- birth to 6 weeks: counselling for parents, hearing test and feeding assessment
- 3 months: surgery to repair a cleft lip
- 6-12 months: surgery to repair a cleft palate
- 18 months: speech assessment
- 3 years: speech assessment
- 5 years: speech assessment
- 8-11 years: bone graft to the cleft in the gum area (alveolus)
- 11-15 years: orthodontic treatment and monitoring jaw growth
- 18 years+: if needed, jaw surgery, lip and nose revision surgery, and final replacements for any missing teeth
Once the initial care plan has been completed, your child will attend regular outpatient appointments at the cleft clinic so that their condition can be monitored closely and any problems can be dealt with.
Important records are taken at key stages of development at age five, 10, 15 and 20 years to monitor how treatment has progressed over time.
If your baby has a cleft, their feeding will need to be assessed so that problems can be resolved. Many babies with a cleft palate have problems breastfeeding due to the gap in the roof of their mouth.
If your baby has difficulty feeding, your specialist cleft nurse can advise on alternative feeding methods. Some babies respond better to alternative feeding methods than others.
One method that works well for some women is expressing breast milk and using a specially made flexible bottle for feeding.
Lip repair surgery
All types of surgery required for cleft lip and palate are available on the NHS. There are 19 centres in the UK and Ireland that specialise in the treatment of cleft lip and palate.
Lip repair surgery is usually carried out when your child is three months old. Your child will be given a general anaesthetic (where they are unconscious) and the cleft lip carefully repaired, including underlying muscles. The nose is usually reshaped at the same time.
The operation usually takes about an hour, although it can take longer if the cleft is severe. The surgery usually leaves a slight scar, but the surgeon will attempt to line up the scar with the natural lines of the lip to make it less noticeable.
Palate repair surgery
Palate repair surgery is usually carried out when your child is six months of age. The muscles and the lining of the palate are rearranged and usually no extra tissue is needed to complete the operation.
The operation usually takes about one-and-a-half hours and is carried out under general anaesthetic.
In some cases, additional surgery may be needed to improve the appearance and function of the lips and mouth. For example, if there is a cleft in the gum, the surgeon will perform a bone graft operation when the child is between nine and 12 years of age. If the jaws have not grown equally, they can be corrected by braces and jaw surgery at the end of growth, at approximately 18 years of age.
Your cleft care team can tell you whether further surgery is required.
Children with a cleft palate are more likely to develop a condition called glue ear. If hearing is significantly reduced, the ENT surgeon may recommend inserting a tiny plastic tube called a grommet into the eardrum. This lets out the sticky secretions and allows air in. Sometimes, a hearing aid may be recommended.
An audiologist (hearing specialist) will assess your child's hearing at birth and a second hearing assessment will take place once your child has had reconstructive surgery. Your child's hearing will also be regularly assessed during their outpatient appointments.
Read more about treating glue ear.
Speech and language therapy
Repairing a cleft palate will significantly reduce the chance of future speech problems. However, approximately half of all children with a repaired cleft palate still need some form of speech therapy. Further corrective surgery may be required for a small number of children who have increased airflow through their nose when they're speaking.
A speech and language therapist (SLT) will carry out an initial assessment after surgery, followed by a further assessment once your child is three years old. If the assessment reveals problems with your child's pronunciation and use of language, the SLT will teach you speech exercises to help your child's development. They may also carry out a number of one-to-one exercises with your child. Children born with cleft lip only do not normally need further therapy.
The SLT will work with your child for as long as they need assistance. Therapy is not usually needed after the age of seven, though specialist investigations may be necessary.
When the cleft involves the gum area, it is common for teeth on either side of the cleft to be tilted or out of position. Often a tooth may be missing, or there may be an extra tooth. The paediatric dentist will monitor the health of your child's teeth and recommend treatment when necessary. It is also important that you register your child with a family dentist.
Orthodontic treatment, which helps improve the alignment and appearance of teeth, may also be required. Treatment can include using braces or other dental appliances to help straighten the teeth. Orthodontic treatment will also monitor the development of the jaws and the bite during growth.
Children with a cleft are more vulnerable to tooth decay, so it is important to encourage them to practise good oral hygiene. See complications of cleft lip and palate for more information.