If you’re born with a cleft lip and/or palate, you’ll have a gap in your lip, palate or both. This occurs in babies when the upper lip and palate (roof of the mouth) don’t join together properly while in the womb.
Cleft lips and palates can be treated at Great Ormond Street Hospital (GOSH) by a large specialist team. The North Thames Cleft team (based at GOSH and Broomfield Hospital, Chelmsford) will look after you until you are an adult.
We still do not know exactly what causes a cleft of the lip and/or palate. We do know that when we develop as babies in the womb, our lips are formed in three parts and our palates in two halves, lying either side of the tongue. Around the fifth or sixth week of development, our lips join and around the seventh or eighth week our palate joins. If this joining process fails completely or stops at any point, a cleft will occur as a result.
A cleft lip and/or palate can affect feeding, speech, hearing and appearance.
If a baby has a cleft palate with or without a cleft lip, they might have trouble feeding properly because they can’t suck. The baby is unable to create a seal enabling them to create suction to get milk from the breast or bottle. Some special bottles are used to help babies with cleft lips and palates feed. But difficulty with feeding can mean the baby gains weight more slowly than usual.
Other symptoms can include hearing problems. Children with the condition are more at risk of glue ear. This can also lead to ear infections. Because the palate is important for speech it is essential to repair the cleft surgically. If you were born with a cleft lip or palate, it’s likely you will have had this surgery in the first year of your life.
A cleft lip can be picked up on an ultrasound scan during pregnancy. It may be spotted during the routine antenatal 20-week scan. Around 60 to 75 per cent of cleft lips are diagnosed this way.
A cleft palate on its own can’t be seen on the scan. This is usually only discovered once the baby is born, during the routine baby check.
A cleft lip or palate is usually repaired with surgery as a baby. Usually this will only be one operation for the lip and one for the palate, but sometimes the baby may need other operations for the best result.
A cleft lip is usually repaired surgically after three months old. An operation to repair a cleft palate is usually done after eight months of age. The operations involve joining the tissues (parts) that weren’t joined at birth.
For significant gaps in the top gum you will need a bone graft operation, which usually happens between eight and 10 years of age. This joins together the bone and the upper jaw and allows us to straighten the teeth.
Sometimes jaw and nose surgery is offered after 16 years of age, but you can choose if you wish to have this.
In most cases, surgery is successful.
If you were born with a cleft lip or palate, we will have been keeping an eye on your hearing, jaw and teeth development, speech, and how you feel since birth.
Most children are able to develop good speech and language skills after surgery. But sometimes a repaired cleft palate can make it difficult to pronounce some sounds clearly. This may affect your speech quality, making it sound a bit ‘nasal’, as if too much air is coming down your nose. A small number of people need an extra operation to help with speech. This involves reducing the amount of air that goes through the nose.
The chance of having a cleft is about one in 700 if no one else in your family has a cleft. If one of your parents or you have a cleft, the chance of future children having a cleft is between one in 25 and one in 40. Talk to your consultant at GOSH if you have any worries or questions about this. He or she will be able to discuss these with you.