Children with a cleft lip or palate may need several treatments and assessments as they grow up.
The cleft is usually treated with surgery. Other treatments, such as speech therapy or dental care, may be needed for associated symptoms.
Your child will be cared for by a specialist multidisciplinary cleft team within an NHS cleft centre.
Your child's care plan
Children with clefts will have a care plan tailored to meet their individual needs. A typical care plan timetable for cleft lip and palate is:
- birth to six weeks – feeding assistance, support for parents, hearing tests and paediatric assessment
- 3-6 months – surgery to repair a cleft lip
- 6-12 months – surgery to repair a cleft palate
- 18 months – speech assessment
- three years – speech assessment
- five years – speech assessment
- 8-12 years – bone graft to a cleft in the gum area
- 12-15 years – orthodontic treatment and monitoring jaw growth
Your child will also need to attend regular outpatient appointments at the cleft clinic so their condition can be monitored closely and any problems can be dealt with.
These will usually be recommended until they're around 21 years of age, when they're likely to have stopped growing.
Surgery
Lip repair surgery
Lip repair surgery is usually carried out when your child is around three months old.
Your child will be given a general anaesthetic (where they're asleep) and the cleft lip carefully repaired and closed with stitches.
The operation usually takes one to two hours.
Most children are in hospital for a day or two. Arrangements may be made for you to stay with them during this time.
The stitches are removed after a few days or may dissolve on their own depending on the type of stitches used.
Your child will have 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. It should fade and become less obvious over time..
Palate repair surgery
Palate repair surgery is usually carried out when your child is 6-12 months old.
The gap in the roof of the mouth is closed and the muscles and the lining of the palate are rearranged. The wound is closed with dissolvable stitches.
The operation usually takes about two hours and is carried out under general anaesthetic. Most children are in hospital for one to three days, and again arrangements may be made for you to stay with them.
The scar from palate repair will be inside the mouth.
Additional surgery
In some cases, additional surgery may be carried out at a later stage to:
- repair a cleft in the gum using a piece of bone (bone graft) – usually done at around 8-12 years of age
- improve the appearance and function of the lips and palate – this may be necessary if the original surgery doesn't heal well or there are any ongoing speech problems
- improve the shape of the nose (rhinoplasty)
- improve the appearance of the jaw – some children born with a cleft lip or palate may have a small or "set-back" lower jaw
Feeding help and advice
Many babies with a cleft palate have problems breastfeeding because of the gap in the roof of their mouth.
They may struggle to form a seal with their mouth – so they may take in a lot of air and milk may come out of their nose. They may also struggle to
put on weight during their first few months.
A specialist cleft nurse can advise on positioning, alternative feeding methods and weaning if necessary.
If breastfeeding isn't possible, they may suggest expressing your breast milk into a flexible bottle that is specially designed for babies with a cleft palate.
Very occasionally, it may be necessary for your baby to be fed through a tube placed into their nose until surgery is carried out.
Treating hearing problems
Children with a cleft palate are more likely to develop a condition called glue ear, where fluid builds up in the ear.
This is because the muscles in the palate are connected to the middle ear. If the muscles aren't working properly because of the cleft, sticky secretions may build up within the middle ear and may reduce hearing.
Your child will have regular hearing tests to check for any issues.
Hearing problems may improve after cleft palate repair and, if necessary, can be treated by inserting tiny plastic tubes called grommets into the eardrums. These allow the fluid to drain from the ear. Sometimes, hearing aids may be recommended.
Dental care
If a cleft involves the gum area, it's 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.
A paediatric dentist will monitor the health of your child's teeth and recommend treatment when necessary.
Orthodontic treatment, which helps improve the alignment and appearance of teeth, may also be required. This can include using braces or other dental appliances to help straighten the teeth.
Brace treatment usually starts after all the baby teeth are lost, but may be necessary before the bone graft, to repair the cleft of the gum.
Children with a cleft are more vulnerable to tooth decay, so it's important to encourage them to practise good oral hygiene and to visit their dentist regularly.
Speech and language therapy
Repairing a cleft palate will significantly reduce the chance of future speech problems, but in some cases, children with a repaired cleft palate still need some form of speech therapy.
A speech and language therapist (SLT) will carry out several assessments of your child's speech as they get older.
If there are any problems, they may recommend further assessment of how the palate is working and/or work with you to help your child develop clear speech. They may refer you to community SLT services nearer to your home.
The SLT will continue to monitor your child's speech until they are fully grown and they will work with your child for as long as they need assistance.
Further corrective surgery may sometimes be required for a small number of children who have increased airflow through their nose when they're speaking, resulting in nasal-sounding speech.
Specialist UK cleft lip and palate sites
England
- Royal Victoria Infirmary, Newcastle-upon-Tyne
- Leeds General Infirmary
- Royal Manchester Children's Hospital
- Alder Hey Children's Hospital, Liverpool
- Nottingham Children's Hospital
- Birmingham Children's Hospital
- Addenbrooke's Hospital, Cambridge
- Great Ormond Street Hospital, London
- Broomfield Hospital, Chelmsford
- John Radcliffe Hospital, Oxford
- Salisbury District Hospital
- Bristol Royal Hospital for Children
- Guy's and St Thomas' Hospital, London
Wales
Scotland
- Royal Hospital for Sick Children, Edinburgh
- Royal Hospital for Sick Children, Glasgow
Northern Ireland
- Children's Hospital, Belfast