"I remember being so excited at my 20 week scan waiting to hear what sex our baby would be, I never thought or considered for a second that something may actually be wrong."
This was the moment Elizabeth from Berkshire learned that her baby would be born with a cleft lip and possibly a cleft palate, a condition that affects 1,000 new babies every year in the UK alone.
"Everyone wants their baby to be born perfect, and I was no different," she said. "Why us, why me, why my baby?"
For many people, the words 'cleft lip and palate' conjure up images of children in faraway countries staring out from newspaper adverts, but for tens of thousands of families in the UK, the reality is much closer to home.
Mothers like Elizabeth go into their 20-week ultrasound scan full of optimism, and are suddenly presented with a future involving multiple surgeries, hospital appointments, teams of specialists, and a twenty-year treatment pathway. Surgery is usually carried out when a baby is just a few months old, and issues with hearing, speech, teeth and appearance can last well into adulthood.
A diagnosis like this can be incredibly isolating. One in 700 babies is born with a cleft, which is more than you may have thought, but still few enough that parents and people affected by cleft may never meet anyone else in the same position. Explaining the basics of the condition over and over again quickly becomes tiresome, and having a child that looks different or has extra needs can make it harder to feel like part of a community of new parents, especially when dealing with stigma and stares from the general public.
'What on earth happened to his face?' a friend might say, or 'Don't worry, she'll look 'normal' soon.'
Dealing with surgery and all the related issues that can go along with a cleft is tough enough - having to cope with ignorant comments and shocked reactions on top of everything else can be exhausting.
That's why the Cleft Lip and Palate Association (CLAPA) exists. We believe that no one should ever have to go through something like this alone, and that they should feel supported every step of the way.
Elizabeth joined CLAPA shortly after her diagnosis, and found a whole community of like-minded people waiting for her. "It's so beneficial talking to other parents to share knowledge and experiences. Knowing your feelings and concerns are perfectly normal and that you are not alone is a great comfort, and any advice on what the future may hold is priceless."
Before it became a part of their lives, most people in our community knew very little about cleft lip and palate and what it could mean. The lack of public awareness, including the perception that it 'doesn't happen anymore' or isn't a problem in the UK, is just one of the barriers faced by people with a cleft trying to live a normal life.
May 7th - 14th was Cleft Lip and Palate Awareness Week.
Events from sponsored walks to bake sales are taking place all across the UK to raise funds and awareness, and on social media CLAPA is asking people like Elizabeth to share what cleft lip and palate means to them with #MyCleftStory.
With tens of thousands of people affected by cleft all over the UK, we want to start a national conversation about cleft lip and palate and the impact it can have on everyday lives. Awareness Week is a chance for the people in the UK cleft community to share their stories, and for everyone else to learn something new. Most of all, it's a chance to celebrate our differences and similarities!
You can read Elizabeth's full story on the CLAPA Website, and join the conversation with #MyCleftStory on Twitter and Facebook. Help us fight the stigma and spread the word this Cleft Lip and Palate Awareness Week!
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