Georgia’s story: “I am the proud mummy of two beautiful sons”
Georgia has two sons, Theo and Jude, who were both born with clefts. She wants to educate people to be more accepting of difference.
On this page
What is cleft lip and/or palate?
A cleft is a gap or split in the upper lip or roof of the mouth (palate) which is present from birth. It occurs because the affected part or parts did not join together fully during the baby’s development in the womb. It is known as a craniofacial condition, meaning it is to do with the skull or face.
Cleft lip and/or palate affects one in 700 babies. Between 2010 and 2020, 10,765 babies were registered as having been born with cleft lip and/or palate in the UK. Of those with the condition, 45% have a cleft palate only, 24% a cleft lip only and 31% have both.
If you have a long-term or permanent scar as a result of being born with a cleft lip and/or palate, you may experience challenges in your day-to-day life. On this page, we look how a cleft may impact your life and the support available to help you overcome the difficulties you may experience.
I really don’t know if I would be the person I am today without Changing Faces. Meeting other people with visible differences that have been through what I have has been amazing. They understand. I’m not on my own. It’s like a weight had been lifted.
Signs and symptoms
Cleft lip and/or palate is usually picked up before birth. If not, it will be detected shortly after the baby is born.
Cleft lip can vary from a small notch to a gap which reaches the nose. Cleft palate may be hidden by the lining of the roof of the mouth.
A cleft may lead to other problems later on. Babies born with a cleft will be referred straight away to an NHS cleft team, and will be closely monitored to pick up these problems as soon as possible:
- Difficulty in feeding because the baby cannot easily form a seal with its lips.
- Ear infections and “glue ear” (where the empty middle part of the ear canal fills up with fluid). These problems can cause hearing problems if not treated.
- Dental problems because of the way cleft lip and/or palate affects the development of the teeth.
- Speech problems.
Causes of the condition
Usually, the lip and palate join together as the baby grows in the womb. However, sometimes this doesn’t happen and the baby is born with a cleft lip, cleft palate or both.
It is unlikely to be caused by anything the mother or parents have done. However, some factors may play a role. These include:
- Smoking or alcohol consumption during pregnancy.
- Obesity during pregnancy.
- Lack of folic acid during pregnancy.
- Certain medications taken during pregnancy, such as anti-seizure medication or steroid tablets.
Is cleft lip and/or palate genetic?
In 15% of cases, the cleft occurs as part of a syndrome (a collection of symptoms which include cleft lip and/or palate). Some syndromes are passed on genetically. The likelihood of passing on a cleft lip and/or palate depends on the syndrome.
Where the cleft is not caused by a syndrome, there is a 2-8% chance that someone with a cleft will pass it onto their child. If their own parents are affected as well, the probability goes up to 10-20%.
Siblings of a person with a cleft have a 1% chance of passing it on to their own children. This may be higher if other family-members are also affected.
Types of cleft lip and/or palate
Cleft lip
A cleft lip may be:
- Unilateral: Affecting one side of the lip.
- Bilateral: Affecting both sides.
- Complete: Stretching up into the nose.
- Incomplete: Does not reach the nose.
Cleft palate
A cleft palate may affect the hard or soft palate. The hard palate is the area closer to the front of the mouth, the soft is further towards the back.
- How is cleft lip and/or palate diagnosed?
- Cleft lip and/or palate is usually diagnosed before birth during the mid-pregnancy anomaly scan done between the 18th and 21st weeks. Most cases (85%) are diagnosed this way.
If the condition is not picked up at this stage, it will be diagnosed straight after birth or during the newborn physical examination which takes place within 72 hours of birth.
