In this section, the general term 'cleft' is used to refer to a cleft lip, cleft palate, or a cleft lip and palate. Specific types of cleft are only referred to when necessary.
Specialist 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 are designed to provide life-long support to children and parents.
Working at the cleft clinic will be a cleft treatment team. The team is made up of the healthcare professionals listed below.
- A specialist cleft nurse - who can provide initial advice about feeding, and will act as your first point of contact between yourself and the rest of the team.
- A surgeon,
- A speech and language therapist.
- An orthodontist - a dentist who specialises in the reconstruction of the teeth.
- An audiologist - a health professional who specialises in assessing and treating hearing conditions.
- A psychologist.
- A paediatrician - a health professional who specialises in treating children.
Care plan timetable
Most children with clefts will receive the same type of care plan, but it will be tailored to meet their individual needs. A typical care plan timetable is described below.
- Birth to six weeks - hearing test and feeding assessment.
- Three months - surgery to repair the lip.
- Six months - surgery to repair the palate.
- Nine months - post-operation hearing test.
- Eighteen months - speech and language assessment,
- Three years - a further assessment of speech and language
Once the initial care plan has been completed, the child will attend regular outpatient appointments at the cleft clinic so that their condition can be closely monitored, and any problems can be dealt with.
Annual appointments are usually recommended until the child reaches the age of five, after which an appointment is recommended every two-and-a-half years.
Feeding
If your baby has a cleft, their ability to feed will need to be assessed, so that any feeding problems can be dealt with. Many babies with clefts have problems sealing their lips around a nipple, or the teat of a bottle.
If your baby has difficulty feeding, your specialist cleft nurse will be able to provide you with advice about alternative feeding methods. Different babies will respond better to some alternative feeding methods than others. Therefore, there are no hard and fast recommendations.
However, one method that works well for some women involves expressing their breast milk into a specially made, flexible bottle, and then using the bottle for feeding. Another alternative is to use a rubber spoon filled with milk rather than the breast, or a bottle.
In cases where a cleft is very large, it may be necessary to feed your baby through a tube that goes into their nose (a nasogastric tube) until the reconstructive surgery has been completed.
Lip-repair surgery
Lip-repair surgery is usually carried out when your child is three months old. In the past, surgery has been carried out when a child was just one, or two, weeks old. However, the results proved no better, and were sometimes worse, than surgery that is carried out at three months.
Most cleft lips are repaired using what is known as the Millard repair procedure, which is named after the pioneering plastic surgeon, Ralph Millard, who first performed it.
During the Millard repair procedure, the surgeon will make an incision on either side of the cleft lip. The cleft lip is pulled down and rotated to produce a more normal looking appearance, before being stitched into place.
The operation usually leaves a slight scar, but the surgeon will attempt to line up the scar with the natural lines of the lip in order to make it is less noticeable.
Palate-repair surgery
Palate-repair surgery is usually carried out when your child is six months old. During surgery, the surgeon will take tissue from either side of the mouth and use it to rebuild the palate and join the muscles together.
Additional surgery
In some cases, additional surgery may be required to improve the appearance and function of the lips and mouth. Your cleft care team should be able to advise you about whether further surgery is required.
Hearing
Your ears are kept free from fluids by a small tube, known as the Eustachian tube. The Eustachian tube re-routes any fluids from your ears down into your nose.
In many children with cleft palates, the structure and length of the Eustachian tube can be adversely affected, which can lead to their ear becoming full of fluid. This condition is known as otitis media with effusion or, more commonly, glue ear. Glue ear can cause ear ache, hearing impairment, and it can increase the likelihood of the child developing an ear infection.
At birth, an audiologist (hearing specialist) will assess your child's hearing, and a second hearing assessment will take place once the reconstructive surgery has been completed.
If there is evidence that your child's hearing is, or is likely to be, affected, you will probably be referred to an ear, nose and throat (ENT) specialist.
One treatment option is to insert tiny tubes through the ear drums in order to help drain away the fluids. Surgery can also help to improve the effectiveness of the Eustachian tube.
Your child's hearing will be regularly assessed during their out-patients appointments at the cleft clinic.
Speech and language therapy
Many children will experience difficulties with their speech and language development because a cleft can affect their diction and pronunciation, making it difficult for them to be understood. Children with clefts sometimes have a nasal tone (a tone of voice that sounds whiney and hollow), and they may have problems pronouncing some consonants.
In most children, speech and language problems will be resolved after the palate-repair surgery, but an estimated 20% of children will require additional help from a speech and language therapist (SLT).
A SLT will carry out an initial assessment after surgery has been completed, 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, and play, 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 require assistance, although in most cases, further therapy is not required after the age of seven. However, in some cases, further surgery may be required in order to improve your child's speech.
Dental care
Many children with clefts also experience problems with the development of their teeth. A common problem is that a child's alveolar ridge (the ridge of bone that supports the upper teeth and gums) does not develop correctly.
Orthodontic treatment (treatment that helps to improve the alignment and appearance of teeth) may be required.
Treatment can include using braces and other devices to straighten the teeth, and surgery to correct the shape and function of the alveolar ridge.
As children with a cleft are more vulnerable to tooth decay, it is important to encourage them to follow a good oral hygiene regime. See the 'complications' section for more information about this.
