Cleft Lip and Palate

Cleft treatment pathway

In the U.K. a baby with a cleft lip has the cleft closed at approximately 3 months of age and a cleft palate closed at approximately 6 – 9 months of age. However, a child born with a cleft lip and/or palate will be looked after very carefully by the cleft team right up until s/he is an adult. This long-term period of care is known as the ‘Cleft treatment pathway’. It begins with a meeting with a Clinical Nurse Specialist (CNS) who contacts families after the 20 week scan or shortly after the birth depending on when the cleft is diagnosed. Families will also meet with the cleft service multidisciplinary team (MDT) in the weeks after the birth. This team is made up of all the specialist health professionals who will be involved in the care of a child born with a cleft. These teams usually include a Clinical Nurse Specialist (CNS), an orthodontist (A dentist who specialises in the correction of teeth irregularities), a paediatric dentist, a speech and language therapist (SALT), one or two surgeons, an audiologist (hearing specialist) and a clinical psychologist. All of the specialists work in the cleft service because children born with a cleft require surgery to close the cleft and they may also need dental treatment (see ‘Dental and orthodontic treatment’) as well as treatment to improve their hearing and speech (see ‘Speech, language and hearing’). Some families will also want to be able to discuss their concerns with a psychologist. The CNS looks after the families throughout the majority of the treatment pathway and is a very good source of support and information. 
The treatment that is provided by the cleft service depends on the type of cleft a child is born with and also the way in which s/he grows and develops. For example, a child born with a unilateral cleft lip (on one side only) may have the lip repaired at 3 months of age and require no further medical treatment. On the other hand, a child born with a cleft lip and palate or cleft palate alone may need ongoing treatment right into adulthood. 
As the child develops and grows further treatment may be offered such as an alveolar bone graft (to close the gap in the line of teeth in the upper jaw), lip revision, rhinoplasty (nose reshaping), and jaw alignment (orthognathic surgery) to adjust the way that the teeth meet and bite together. Treatment such as rhinoplasty and orthognathic surgery are offered in late teenage and early adult years when the face has stopped growing.
It is also common for a child born with a cleft lip and/or palate to receive specialist dental care because they are more likely to have fewer teeth (hypodontia) or extra teeth (supernumerary) than children without a cleft. Children born with a cleft are also more likely to have a narrow top jaw, perhaps because of previous surgery, and the teeth that do grow may become crowded and crooked. (See ‘Dental and orthodontic treatment’). 

Children born with a cleft palate may also develop glue ear due to a build-up of fluid in the inner ear and this can affect their hearing. Some children are fitted with grommets (ventilation tubes) in the ear to help drain excess fluid from the ear. Sometimes children with clefts are fitted with temporary hearing aids if their hearing is impaired.

There are also some rarer genetic conditions associated with having a cleft palate such as Stickler Syndrome, Pierre Robin Sequence (PRS) and Di George Syndrome (22q11 deletion syndrome) and these children will require additional care (see ‘Cleft and other conditions’).
The ‘cleft treatment pathway’ is intended to be family focused and families can develop open and trusting relationships with members of the cleft team. The CNS will be the first point of contact and help co-ordinate the care of the child. A diagnosis of cleft is likely to be an overwhelming experience and there will be a lot of information to take in (see ‘Emotional impact and support’). When the child is born it may be challenging to understand the child’s needs and the treatment that is required. There are many individual factors about the child that will determine the best treatment and therapy for him or her.
Children born with a cleft lip may have no problems or concerns psychologically, but parents may worry about how their child will develop and about difficulties they may face in the future. Parents may also want information about how to support their child through the ‘cleft treatment pathway’. Parents may be unsure what to tell other people (see ‘Telling other people’) or how to talk to their child about their cleft. Others are concerned about the possibility of teasing when their child starts school. Most of the U.K. regional Cleft Services have a psychologist who will attend the MDT meetings as part of the ‘cleft treatment pathway’.

Psychological support can help to develop attitudes, beliefs and behaviours that will empower the child and enable him or her to engage with others at school and develop social relationships. A psychologist can also provide support for parents if they need it as their child progresses through the ‘cleft treatment pathway’. 
Children who are born with a cleft are monitored within the cleft service until the age of 21. However, even after this time there are still opportunities within the U.K. NHS for adults to receive continued care if they experience problems associated with the cleft. (See ‘Cleft treatment as an adult’).
Last reviewed June 2017.


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