Understanding the challenges of living with a cleft lip | Letters

With reference to the article by Hugh Davies about his experiences of having been born with a cleft lip (A moment that changed me: I cried about my cleft lip for the first time in my 60s, 29 April), it is fantastic to see cleft experiences given national attention, especially when there is still so much misunderstanding about what a cleft truly is. It is often assumed to be a small cosmetic difference. In reality, it shapes feeding, hearing, speech, dental development, facial growth and emotional wellbeing from the very first days of life. Someone in their 60s speaking openly about the lifelong impact of this is powerful.

The reforms that regionalised cleft care in the early 2000s have meant that experiences have changed since Hugh’s childhood. Today’s children benefit from coordinated surgical care, better speech and hearing support, and a far stronger understanding of psychological needs.

However, there is still so much we do not know, particularly about the journey into adulthood. A current UK-wide research programme funded by the National Institute of Health and Care Research – the Cleft@18-23 study – is addressing this gap. It aims to understand the experiences, challenges and hopes of young adults aged 18 to 23 born with a cleft. There are research clinics taking place across the UK that young people can attend, or they can take part in online interviews to share their experiences.

Young people have helped shape this study and they have spoken movingly about how different their experiences are from older generations and how meaningful it feels to build a community that spans ages. Stories like the one you published remind us why this work matters and why every generation’s voice deserves to be heard.
Dr Stephanie van Eeden
Cleft@18-23 study, University of Bristol

I agree with a lot of what Hugh Davies states about cleft palate. I am also in my 60s, also with a cleft palate. Our facial features do affect how others respond to us and judge our intelligence, which can have lifetime consequences. It makes one shy in social situations, but it also makes one more determined to be the best person one can be, regardless of what others think.

I was lucky to be treated by a top surgeon who worked in the local hospital when I was a child. I feel sorry for less fortunate children in poor countries with fewer treatment opportunities. The Operation Smile charity is very important.
Kenneth Low
York