Take a deep breath

If you've just had a diagnosis, whether at an antenatal scan or after your baby was born, the chances are you're feeling a little overwhelmed. You may have been given a lot of information all at once or you may still be in the dark and wondering what will happen to your child. It is important to remain calm, and to remember that a child born with a cleft in the UK today can expect the best possible care from one of the specialist cleft teams who will be there for your child right through until adulthood.

It is no one's fault

There is no single cause of cleft lip and/or palate. Sometimes there is a clear family history of cleft, sometimes it is down to the ways specific genes work together or as the result of another condition. Occasionally it is down to something as random as where the baby begins to grow in the womb. Whatever the reason, cleft lip and/or palate is not something that can be predicted or prevented. It can happen to anyone, and in the UK more than 1,000 babies with a cleft are born each year.

Step away from Google

Many parents tell us that an internet search was the first thing they did after the diagnosis, and almost every one of them regrets it. It is tempting to Google around for answers, especially if you are waiting to have a diagnosis confirmed, but all the information can be overwhelming and sometimes even frightening.

You may also encounter a lot of misinformation or jargon that will only confuse things further, especially if you find yourself looking up information about cleft in developing countries or on medical websites. Try to stick to information you know you can trust that is aimed at people in your situation, such as what is provided on our website, clapa.com, or by your local cleft team.

Connect with others

With just over 20,000 members, the Clapa Community is the best place to come for peer support. Our trained parent contacts based in each region of the UK are on call to help you through any aspect of having a child with a cleft, and our Happy Faces groups are the perfect way to meet other families in your area. We also have a support group for parents on Facebook with 5,000 members. This is the perfect place to ask questions, even those you may think are silly, and get reassurance from others who have been through it before.

Take charge

Everyone handles a change like this differently, but some people find the best way to feel in control of the situation is to understand it. Our website or the website of your local cleft team is a good place to start, but you may want to use other resources to help explain things to friends and family members, such as a video which Clapa helped fund called Easing the First Few Hours, which gives a basic introduction to cleft lip and palate, including how it happens and how it is treated.

If you are still pregnant and want to know what your baby might look like, you can get a free 3D or 4D scan at centres all around the UK. You can also have a look at our before and after gallery to get an idea of how your baby's face might change after surgery.