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 will be 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 can provide initial advice about feeding and will act as your first point of contact
- a cleft surgeon, who will carry out the repair of the cleft
- a speech and language therapist
- an orthodontist, who specialises in straightening teeth with braces (an appliance that is fitted in the mouth to help correct the position of the teeth)
- a paediatric (children's) dentist
- an audiologist and ear, nose and throat (ENT) surgeon, who assesses and treats hearing conditions
- a psychologist, who has been trained in the scientific study of the mind
- a paediatrician, who specialises in treating children
Care plan timetable
Most children with clefts will receive the same type of care plan, which will be tailored to meet their individual needs. A typical care plan timetable is described below.
- birth to 6 weeks: examination to diagnose cleft lip and palate, 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)
- 2-15 years: orthodontic treatment
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 closely monitored and any problems dealt with.
Feeding
If your baby has a cleft, their ability to feed will need to be assessed so that any problems can be dealt with. Many babies with a cleft palate have problems sucking through a nipple due to the gap in the roof of their mouth.
If your baby has difficulty feeding, your specialist cleft nurse can give you advice about 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 into a specially made flexible bottle and using the 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 (see box, left) in the UK 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 (put to sleep) and the cleft lip will be carefully repaired, including the 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 particularly severe. The operation 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.
Your child will be given a general anaesthetic and the operation will usually take about one-and-a-half hours. Again, the exact time will vary depending on how severe the cleft is.
Additional surgery
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 9 and 12 years of age.
Your cleft care team can tell you whether further surgery is required.
Hearing
Children with a cleft palate are more likely to develop a condition called glue ear. The eustachian tube, which connects the back of the nose with the middle ear, may not open and close properly due to the cleft palate.
This causes sticky secretions to build up in the middle ear, which can impair hearing. If hearing is significantly reduced, the ENT surgeon may recommend treatment, such as the insertion of 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.
At birth, an audiologist (hearing specialist) will assess your child's hearing 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.
Speech and language therapy
Surgery to repair a cleft palate will significantly reduce the chances of any future speech problems occurring. However, approximately half of all children with a repaired cleft palate will still need to have some form of speech therapy. The speech of a small number of children will have a nasal tone and further corrective surgery may be required.
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 a number of speech exercises that you can use to help your child's development. They may also carry out a number of one-to-one exercises with your child.
The SLT will work with your child for as long as they need assistance, although therapy is not usually needed after the age of seven. In some cases, further surgery may be needed to help improve your child's speech.
Dental care
When the cleft involves the gum area, it is common for the teeth on either side of the cleft to be tilted or out of position. Sometimes, 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 be required. Treatment may include using braces or other dental appliances to help straighten the teeth.
Children with a cleft are more vulnerable to tooth decay, so it is important to encourage them to practise good oral hygiene. See Cleft lip and palate - complications for more information.
