Cleft Lip and Palate
The UK has a well-developed service for the treatment of cleft lip and palate, with a number of specialist centres dedicated to the surgical repair of clefts, and an outreach nursing network. Babies born with cleft lip and/or palate are seen within 24 hours of diagnosis by a specialist nurse. From this moment onwards, they are treated by an expert multi-disciplinary team. All surgery is carried out by consultants who have extensive experience in this area, and whose main specialty interest is cleft lip and palate. These resources, and this wealth of expertise, have led to improved patient outcomes in recent years
What does this condition involve?
Cleft lip arises early on when a baby is in the womb. It occurs when the components that make up the lip fail to join up properly. This is referred to as a failure of fusion. There are many reasons why cleft lip occurs; sometimes there can be a family history of clefts, sometimes it just happens out of the blue. Whatever the reason, most cleft lips can be detected during antenatal screening – that is, before birth during a mother’s 20 week anomaly scan. This can enable parents to prepare themselves and to meet with specialist nurses – although of course, some parents may prefer not to know.
Cleft lip can vary from a slight notch (known as an incomplete cleft) to a whole side-cleft running up to the nose (complete cleft lip). A cleft can sometimes go through the lip and gum, which will affect the teeth, meaning that a baby will need to be seen by a dental expert as part of their multi-disciplinary treatment. In the worse cases, clefts can occur on both sides of the mouth – this is known as a bilateral cleft.
A cleft lip alone does not normally affect feeding or speech.
Cleft palate also arises early on in the womb, and again occurs when the main components of the palate – the two palatal shelves in the roof of the mouth – fail to fuse properly. When the cleft is partial, it affects only the soft palate at the back of the mouth; whereas a complete cleft of the palate extends to the hard, bony part at the front of the mouth (the hard palate). Cleft palates are more difficult to detect in antenatal scans, and some clefts of the soft palate may not be picked up until some time after birth.
Cleft palate can lead to significant feeding problems. Babies with a cleft palate may find it hard to form a vacuum in the mouth, making it difficult for them to suck. They may feed too slowly, take in too much air while feeding, or bring up milk through the nose. Breastfeeding is often impossible. These problems can lead to babies becoming malnourished, causing failure to thrive unless special help and advice is given. If a cleft palate is not repaired surgically, speech problems will develop when a child is older.
Above is an example of an isolated cleft palate (without a cleft lip). In the repair the muscles of the soft palate are divided from their abnormal insertion into the back of the hard palate and sewn together to form a sling across the soft palate. The cleft is repaired by sewing together the two layers of the palate that separate the mouth from the nose.
What surgery is available, and what techniques are involved?
For both conditions, reconstructive surgery is available to repair the incompletely fused area of the lip and palate.
For cleft lip, surgery normally takes place around three months after birth. It requires a general anaesthetic and takes roughly one and a half hours. The surgeon re-arranges the skin and muscles of the lip using.flaps of local tissue to help repair the cleft. For clefts of the gum, a bone-graft operation will be required when a child is between nine and 12 years of age.
For cleft palate, surgery takes place between six months to one year. The lining and muscles of the palate are re-arranged, but normally no extra tissue is required. The operation is also carried out under general anaesthetic and takes approximately one and a half hours. However, in both cases, operating times may vary depending on the severity of the case and the preferred techniques of the surgeon.
Is this surgery available on the NHS?
Yes. There are eleven NHS centres in the UK dedicated to the treatment of cleft lip and palate.
Who will my baby see?
Babies with cleft lip and/or palate will be seen by a multi-disciplinary treatment team. This team will be made up of specialists working together to make sure that the best possible treatment is given. The specialists within a cleft lip and palate team may include the following:
• Cleft Nurse
• ENT Surgeon
• Paediatric dentist
• Speech and Language Therapist
What should I expect in terms of treatment, procedures and outcomes?
The reorganisation of cleft lip and palate treatment in the UK has led to improved patient outcomes, with a high success rate in achieving near normal visual appearances in many cases and function of the lip and mouth.
Most babies recover very quickly after their operations and will not experience much pain in the days that follow, although medication is given for any discomfort. For cleft lip, patients can go home within a day or two of surgery. For cleft palate, patients will normally spend several days in hospital; arrangements will be made for parents to stay with their babies during this time.
Patients with repaired cleft lips will need to return to hospital to have their stitches removed a few days after surgery, while the stitches used in cleft palate operations will dissolve in the patient’s mouth.
For cases of cleft lip, there will be some scarring of the upper lip, but on the whole the natural shape of the lip will be restored by the operation. It is sometimes necessary for revision surgery to be carried out after several years to improve the appearance of a scar, the shape of the nose or, in the case of cleft palate, to improve speech.
Once they have been operated on, patients can expect follow-up appointments until the age of 20. In some cases, patients may experience problems with facial development. Failure of the jaw to grow forward normally, for instance, can lead to an inward bite and a face that appears slightly flat. This may require corrective facial surgery, known as maxillary osteotomy and is carried out after the age of 17. The appearance of the nose can also be affected, requiring some patients to have cosmetic nose surgery, or rhinoplasty, to set this right.
The Cleft Lip and Palate Association is a good source of information, with links to dedicated cleft lip and palate medical units.