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 common myths and responding with the facts!
“Cleft doesn’t happen in the UK.”
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) that 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 which 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 with 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 surgery.
“Lots of people assume that once the gap is mended you’re done, but it’s just the tip of the iceberg.” – Adult born with a cleft
- 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.
- 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.
Whether it’s the first operation or the 20th, families and adults still need information, support and reassurance to get through it. CLAPA works to provide exactly that to thousands of people in need every year. Your support can help us be there for everyone who needs us.
“Why don’t you have a scar?”
45% of babies born with a cleft have a ‘cleft palate’ without a ‘cleft lip’. This means the gap was in the roof of their mouth, not their lip. Just because you can’t see the scar doesn’t mean it isn’t there!
- Your palate is the roof of your mouth. It’s harder near the front towards your teeth and softer towards the back. People often mistakenly use the term ‘cleft palate’ when they mean ‘cleft lip’. A baby born with a cleft can have a cleft lip, cleft palate, or both.
- The palate is important for lots of things including eating and speaking. It also helps with hearing, as the ears, nose and throat are all connected. A cleft palate can make all these things very difficult.
- Babies with a cleft palate cannot create a vacuum with their mouths, so when they try to feed it’s like drinking through a straw with a hole in it. Most will need special bottles provided by CLAPA until the cleft is repaired at 6-12 months. Some will need to use feeding tubes to make sure they get all the nutrition they need as they grow.
- Half of all children with a cleft palate will need speech therapy. Around 40% of those children will still speak in a ‘noticeably different’ way to other children by the time they start school.
- A cleft palate can have a lasting and profound impact, but because it’s not ‘visible’ from the outside, most people know very little about it. In some cases, it isn’t diagnosed for months or even years, meaning families can’t get the help and support they need.
“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!
Myth: “Your difference will define your life.”
A difference like cleft lip and palate is part of someone’s life, not all of it!
We think Olympic gold medallist Kieran West said it best in this interview about being born with a cleft:
“I believe that people shouldn’t think of themselves as being defined by having a cleft. You are who you are, and being born with a cleft doesn’t affect any of your abilities. You are as tall, as clever or as fast, with or without a cleft. I know how good I am at something, and I’ve shown myself and the world that I am, and it has nothing to do with whether or not I was born with a cleft.”