Cleft means ‘split’ or ‘separation’. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary.
A cleft lip is a condition that creates an opening in the upper lip between the mouth and nose. It looks as though there is a split in the lip. It can range from a slight notch in the coloured portion of the lip to complete separation in one or both sides of the lip extending up and into the nose. A cleft on one side is called a unilateral cleft. If a cleft occurs on both sides it is called a bilateral cleft.
A cleft in the gum may occur in association with a cleft lip. This may range from a small notch in the gum to a complete division of the gum into separate parts. The “before’ and “after surgery” pictures below show a girl with a complete unilateral cleft lip and partially cleft gum.
A cleft palate occurs when the roof of the mouth has not joined completely. The back of the palate (towards the throat) is called the soft palate and the front (towards the mouth) is known as the hard palate. If you feel the inside of your mouth with your tongue, you will be able to notice the difference between the soft and the hard palate. A cleft palate can range from just an opening at the back of the soft palate to a nearly complete separation of the roof of the mouth (soft and hard palate). Sometimes a baby with a cleft palate may have a small lower jaw (or mandible) and a few babies with this combination may have difficulties with breathing easily. This conditionay be called Pierre Robin Sequence.
How does it happen?
The cause of clefts is not understood very well and the European Cleft Organization is involved in research projects to try to determine why clefts occur. Whilst we know what happens, we do not know why. Sometimes clefts run in families and sometimes a baby is born with a cleft without anyone else in the family having one. A consultation with a geneticist may give you an indication of the chances of your baby being born with cleft if someone else in the family has a cleft. In general, if one of the parents has a cleft; the chances of a baby being born with a cleft is about 1 in 30.
Is my baby healthy?
Some people are worried that a cleft might be associated with learning difficulties, heart conditions or other disorders. Though this can be the case, it is very unusual. Most babies born with a cleft are perfectly healthy. You can expect your child to suffer the same childhood ailments as any other child and these will not be related to the cleft.
How will my child be affected?
Feeding: Most babies with a cleft lip feed very well, though some may need a little help. If you baby has a cleft palate , he or she might have some difficulties to begin with. A specialist nurse or speech therapist should be able to support you with this and a special feeding bottle and teat may be offered to you to.
Speech: Some children with cleft palate have difficulties when they begin talking as air can escape down their noses. This happens because the palate muscle may not be working exactly as it should. Difficulties can usually be overcome with early attention of a speech therapist . Further surgery may occasionally be necessary to ensure that the palate is working properly.
Hearing: Some children with a cleft palate can experience temporary hearing difficulties as a result of excess fluid in the middle ear (ottitis media, also known as glue ear). Your child’s hearing will be monitored to check for this. Most hearing difficulties will disappear as your child gets older.
Teeth: If your baby has a cleft palate, there might not be enough space for teeth to grow into as he or she gets older. An orthodontist will monitor the development of the teeth and make sure they are correctly positioned.
General Appearance: Clefts can vary in size and severity. This means that one baby born with a cleft may look very different to another. In general, a cleft lip is quite obvious in a new-born baby, and he or she will look different from a baby born without a cleft until the operation to close the cleft. This will probably happen by the time your baby is 9 months old. Though surgery is now very good, there will always be some visible scarring. As your child grows you can help them feel comfortable about how he or she looks. Children can feel quite sensitive about looking even a little bit different to others. They may become particularly aware of this when they begin nursery school and, later, change schools. The more you are able to answer any questions they might have, and respond to their feelings as they grow up, the more likely it is they will be able to stop worrying about it.
Your child will be treated by some, or all of the following medical specialists:
- Specialist nurse
- Speech and language therapist
Surgery to repair a cleft lip will normally take place during the first 9 months of your baby’s life. Surgery to repair the palate takes place at different times according to local protocols but should be complete by the time your child is 2 years old, and often much earlier. Further operations my be necessary as your child grows and it is common for surgery to be done when your child is between 9 and 11 to help positioning of the second teeth