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Children with a cleft lip or palate will need several treatments and assessments as they grow up.
A cleft is usually treated with surgery. Other treatments, such as speech therapy and dental care, may also be needed.
Your child will be cared for by a specialist cleft team at an NHS cleft centre.
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:
Your child will also need to attend regular outpatient appointments at a cleft centre 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.
Lip repair surgery is usually done when your baby is around 3 months old.
Your baby will be given a general anaesthetic (where they're unconscious) and the cleft lip will be repaired and closed with stitches.
The operation usually takes 1 to 2 hours.
Most babies are in hospital for 1 to 2 days. Arrangements may be made for you to stay with them during this time.
The stitches will be removed after a few days, or may dissolve on their own.
Your child will have a slight scar, but the surgeon will try 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 is usually done when your baby is 6 to 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 2 hours and is done using a general anaesthetic. Most children are in hospital for 1 to 3 days, and again arrangements may be made for you to stay with them.
The scar from palate repair will be inside the mouth.
In some cases, additional surgery may be needed at a later stage to:
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 is not possible, they may suggest expressing your breast milk into a flexible bottle that is 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.
Children with a cleft palate are more likely to develop a condition called glue ear, where fluid builds up in the 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.
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. It's 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. This can include braces or other dental appliances to help straighten the teeth.
Brace treatment usually starts after all the baby teeth have been lost, but may be necessary before a bone graft to repair the cleft in 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.
Repairing a cleft palate will significantly reduce the chance of speech problems, but in some cases, children with a repaired cleft palate still need speech therapy.
A speech and language therapist (SLT) will assess your child's speech several times 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 near 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.
