The Cleft Journey

One in 700 people is born with a cleft, so it’s a condition many families will never have thought about before it suddenly becomes part of their lives. There are a lot of misconceptions about cleft lip and palate, and whether you’re an expectant parent with a new diagnosis or a grown adult who’s been dealing with it all your life, chances are you’ve already answered your fair share of difficult questions.

We asked our community what they think the biggest myths are about cleft lip and palate. What do they have to explain every time cleft comes up? What do they wish everyone they met understood about cleft and the way it impacted their lives?

This Cleft Lip and Palate Awareness Week, we’ll be sharing these top five myths and responding with facts. Look out for our posts on Instagram, Facebook and Twitter, and make sure to share with your own networks to tell everyone about your own journey and why you’re supporting Cleft Awareness Week.

Thank you to CLAPA volunteer Bronwen for this lovely video about her cleft journey.

“A cleft is fixed with one simple surgery.”

Some people born with a cleft 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.

“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. The first usually happens at just three months old.

Follow-up operations can help with speech, teeth growth, breathing, and more. Some adults who were born with a cleft have had 20+ operations on their mouth, nose and jaw.

“Sometimes I would talk with friends about my cleft and forget that it’s not a ‘normal’ teenager thing to make decisions about having surgery on your face. But everyone has things that are different about them – this is mine.” – Adult born with a cleft

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.

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.

“My son has had 18 surgeries total and takes them all in stride, he’s so incredibly resilient. Every time, I feel like we’re right at the start of our journey and I’m handing over my 3-month-old baby to the surgical team for the first time. You never stop worrying.” Parent of an adult 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 around 1 in 30 people born with a cleft will pass it on to their future children. This will change depending on the cause of the adult’s cleft, and for some, it will be as high as a 1 in 2 chance. 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 be ‘a cure’ which will stop it from happening any time soon. 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.
  • Whatever the causes of a cleft in any particular case, people still need support and reassurance as they go through their cleft journey.

“Why don’t you have a scar?”

45% of babies born with a cleft have a ‘cleft palate’ only. 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 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, and of those, around 40% will still have speech which sounds noticeably different 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 aren’t able to get the help and support they need.

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.

“I really don’t think that being born with a cleft matters at all, as long as it doesn’t matter to you.  There will always be people who try to poke fun, and my advice is to avoid them – it’s their loss, not yours.  If you don’t think of the cleft as being a major part of who you are, then generally other people won’t either.”

What’s Your Advice?

This Cleft Lip and Palate Awareness Week, thanks to you sharing your stories and experiences with the people in your life, you’ve helped so many understand the realities of the cleft journey.

You’ve also helped other people affected by cleft know that not only are they not alone, but that there are thousands of others in the UK just like them.

Looking back, if you had to share one thing you’ve learned along the way, one thing you wish you could have heard and understood right at the start, what would it be?

We’ll publish your advice throughout the rest of Awareness Week and beyond.

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