We spoke to 15 people aged between 17 and 65 years of age about their experiences of being born with a cleft lip and/or palate and the impact it has had on their lives. Some of these were also parents of children born with clefts. While they discussed experiences of bullying in their early years, over time they had come to accept that they had a visible difference and, for some, that their speech sounded different to others within their social group.
Most people had positive experiences of the surgery they had received as children and teenagers and were satisfied with the outcome as far as their appearance was concerned. They also believed that the other treatments they had received from the cleft services, including speech and language therapy and psychological support, had helped them to feel more accepted by society. (See ‘Social interaction and public awareness‘ and ‘Social interaction and relationships’).
They described having strong personalities and they attributed this to being born and living with a visible and/or speech difference. They also expressed a determination to achieve their life goals: for example, many of those we interviewed had pursued careers in the public domain such as teaching and education, healthcare and the arts.
Lizzie was not aware of her visible difference until she went to school and this experience has helped to shape her character and her self-determination to succeed in life.
Ryerson believes that being born with a cleft has not held him back in life and together with the support of his family has made him a more outgoing person.
Iona believes that having a cleft may make her different from others although it does not define her as a person. To be able to accept having a cleft it is important to have good support and be prepared to talk to others.
Having a visible difference was not always viewed in a negative way by adults born with a cleft. For example, as a teenager it suited Jon’s personality that he looked different from the other boys in his school, and he believes he would have been teased by other boys even if he didn’t have a cleft.
Jon believes that he would he would have been teased as a teenager whether he was born with a cleft or not and does not think the teasing has had a big impact on his wellbeing.
There was some concern amongst younger adults born with a cleft that health professionals, particularly cleft surgeons, were continuously striving to improve their appearance despite teenagers and young adults being comfortable with their looks.
Although her surgeon was suggesting further operations Lizzie reached a point where she was content with her cleft treatment and her appearance.
Jon considered further cleft treatment as an adult but decided that there would be no significant benefit at this stage of his life.
Mary Z was born with a cleft lip and palate and she also has skeletal dysplasia. She considers that her cleft is not a defining feature and reached a stage as a teenager where she refused further cleft treatment.
Amongst the adults we spoke to, engagement in sport or creative arts was seen as a way of communicating with others, developing self-confidence and raising awareness of cleft issues.