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 6 weeks – feeding assistance, support for parents, hearing tests and paediatric assessment
- 3 to 6 months – surgery to repair a cleft lip
- 6 to 12 months – surgery to repair a cleft palate
- 18 months – speech assessment
- 3 years – speech assessment
- 5 years – speech assessment
- 8 to 12 years – bone graft to repair a cleft in the gum area
- 12 to 15 years – orthodontic treatment and monitoring jaw growth
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
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
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:
- repair a cleft in the gum using a piece of bone (a bone graft) – usually done at around 8 to 12 years of age
- improve the appearance and function of the lips and palate – this may be necessary if the original surgery did not heal well or there are 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 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.
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 are not 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.
Read more about treating glue ear.
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.
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.
Speech and language therapy
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 of 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.
Specialist UK cleft lip and palate centres
- 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
- Morriston Hospital, Swansea
- Royal Hospital for Sick Children, Edinburgh
Royal Hospital for Sick Children, Glasgow
- Children's Hospital, Belfast