From surgery to feeding, there’s a lot the world still doesn’t understand about cleft.
This Cleft Lip and Palate Awareness Week, we’re calling out 5 common misconceptions, and responding with the facts!
“Cleft doesn’t happen in the UK anymore.”
One in 700 babies is born with a cleft. That’s three every day in the UK.
- One in 700 babies is born with a cleft around the world. That’s around 1,200 each year in the UK.
- Cleft is the most common ‘craniofacial abnormality’ (something affecting the skull and face) which babies can be born with.
- Around 45% have a cleft palate (a gap in the roof of the mouth) and not a cleft lip, so you can’t tell just by looking if someone was born with a cleft.
“The parents must have done something wrong.”
The causes of cleft are complicated and will be different for everyone, but it’s very unlikely to be because of something a child’s parents did or didn’t do.
- There are many reasons why a baby might have a cleft. It’s usually because of several different factors coming together in a way that can’t be predicted or prevented. These include things passed on from parents (genes) and things in the environment during pregnancy. Find out more about what causes a cleft.
- It can happen in any pregnancy, even when there is no known family history.
- Only 1 in 30 people born with a cleft will pass it on to future children. This is based on studies showing that 2-8% of adults have a baby with a cleft. This will change depending on the cause of the adult’s cleft, and for some, it will be as high as 1 in 2. Adults interested in finding out more can get genetic testing through their Cleft Team.
- Because of how complex cleft is and how many different factors are involved, it’s unlikely there will ever be ‘a cure’, but there is a great deal of research focused on improving our understanding of the many factors contributing to a cleft. Find out more about this research.
“It’s fixed with one simple operation.”
Some babies will only need a single operation, but many will have more as they grow up, and being born with a cleft is about much more than just surgery.
- Babies born with a cleft lip and palate will need two or more operations to close the gaps in their lip and mouth. These usually happen before a baby’s first birthday.
- Some adults who were born with a cleft have 20+ operations on their mouth, nose and jaw.
- Follow-up operations can help with speech, teeth growth, breathing, and more.
- However many operations are needed, families and adults still need information, support and reassurance to get through it.
- When talking about operations, we avoid terms like ‘fix’ because the operation itself is just one part of a longer treatment journey for most people. The gap in a lip or palate can be closed with surgery, but a cleft isn’t ‘fixed’ this way.
“It’s just a scar.”
A cleft can affect speech, hearing, feeding, teeth, and more. And, in an appearance-obsessed society, a scar can be more than skin-deep.
- Around 50% of children born with a cleft need some form of speech therapy to make sure other children can understand them by the time they start school.
- A cleft lip can affect the gums, meaning adult teeth can’t come through properly without a bone marrow transplant from the hip to the gum at around 8-12 years old.
- Babies born with a cleft palate cannot form a vacuum in their mouth, so trying to feed from a breast or bottle can be like drinking through a straw with a hole in it. This means that they often need to use specialist bottles provided by CLAPA. Some will also need to feed through a thin tube that goes through their nose and into their stomach.
“Babies with a cleft lip can’t smile.”
Yes, they can!
- Babies with a cleft lip will laugh and smile just like any other baby. They don’t know anything is different.
- While it can be difficult to see the change in their baby’s face after surgery, many parents and carers like to say they’re lucky to get to fall in love with two smiles.
- Every smile tells a story, so share yours this Awareness Week!