Iona’s Cleft Story
One of the final year students Iona shares on the blog her Cleft story as part of Cleft Lip and Palate Awareness Week
1 in 700 children are born with a cleft lip and / or palate in the UK each year and it is one of the most common birth defects. Most people know that a cleft is hole in the lip or palate and an operation at around 6 months old closes it but there is a lot more to it than that. As it is cleft lip and palate awareness week, it is a perfect opportunity to tell you a bit more about what a cleft is and share my cleft story.
A cleft is a gap where the lip and / or palate hasn’t formed during pregnancy. Typically within the first 6 months of a child’s life they will have an operation to close the gap and treatment often continues into early adulthood. Further treatment involves further repairs of the lip and palate and helps to improve eating, speaking, hearing and also correct problems with the nose and teeth.
Types of cleft before surgery
Cleft Lip and Palate Association
The only non-NHS support service for those affected by a cleft in the UK is the Cleft Lip and Palate Association (CLAPA). CLAPA supports families when they receive a diagnosis of a cleft to help with the likes of feeding by offering specialised equipment. Support continues for children and their families as well as adults throughout their treatment journey in the form of emotional support and signposting, local branches that organise events as well as larger events across the country that bring together adults, children and families.
My Cleft Story
I was born with Van Der Woude syndrome – a condition that causes a cleft palate and lip pits of the lower lips. I have had countless operations throughout my life to help improve the function of my mouth and more recently to improve my appearance. Having a cleft is a big part of the person I am and I always try and take everything in my stride and stay positive. However, it isn’t always easy. There are times when I wish I didn’t have scars, I didn’t sound different to everyone else and I didn’t have to have operations.
Throughout my 4 years at university I’ve had to fit in operations whenever I can and more importantly, I’ve had to endure too many liquid diets – oh the struggles! It has been hard work but I couldn’t have done it without the amazing support from my classmates and my personal tutor, Dr Aisha Holloway.
I’ve never let my cleft hold me back – pursuing a career in nursing has always been what I wanted to do since my earliest memories of having operations. I’m now about to graduate and I look forward to using my position as a staff nurse alongside my volunteer role for the Cleft Lip and Palate Association to provide support for those affected by disfigurement.
Although I still have a few last operations ahead of me, below is some photos of my journey so far.
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