CLEFT
PROJECT
We plan to make a series of films to share real experiences that engage and inform families affected by cleft lip and palate in the UK.
What is Cleft:
Cleft lip and cleft palate are relatively common occurrences - one in 700 babies are born with a cleft. A cleft happens in early pregnancy during facial development, some parts of the face don’t join together as they should, which leaves a cleft (or a gap) in the lip, gum, hard palate and/or soft palate. Nobody knows exactly what causes it, it is very unlikely to be because of anything a parent did or did not do.
In the UK, a typical cleft clinical journey runs from birth, with first surgery at around 3 months to a year, and a number of potential medical interventions until the face stops growing at around 18-20 years of age. Every journey is unique. Though the clinical pathway can be considerable, most individuals live a healthy life.
Finding out that you are going to have or have had a baby with a cleft can understandably cause distress for the parents and family. Parents are often concerned that they did something to cause this, and have a lot of worry for the life of their baby and the surgery and treatments to come.
‘When you find out that your child is going to be born with a cleft lip and palate, it does feel like the end of the world’
‘I spent months blaming myself for something that was entirely out of my control.’
Quotes from parents
Our project:
We have identified a lack of high-quality resources focused around the real experiences of being a parent of, or a person born with cleft lip or palate. We’d like to address this, by gathering a team, clinical, funders and people with lived experience as a parent of, or person born with a cleft lip and palate, we plan to make animated resources to raise awareness and support people living with cleft in developed countries to:
-
Support parents when they have a baby with cleft lip/palate, to help to prepare them emotionally and psychologically and give them greater understanding of the journey ahead.
-
Support the child as they grow by sharing other young people’s experiences of operations and advice of how they navigated their way through challenges related to their cleft lip/palate.
-
Support health care professionals by giving patients easy to access information to aid conversations about cleft treatment and pathways.
‘I wish I’d known how little difference it would make to my daughter’s personality
and to the way that we love her. I wish I’d known then how magical she would be.’
Quote from a parent
FILM 1 - A Life with Cleft
This film will give an overview of the cleft journey through interviewed voices of people with lived experience, parents and people who are growing up or have grown up through the cleft pathway. It will be a positive and bright film to ease worry.
The film will help parents and families to understand the journey and what it is to have a life that starts with a cleft lip or cleft palate. It will also help children to understand their journey.
Films for Parents
Films could include:
Birth to First Surgery
Hearing parents experiences of the early months, with advice on caring for a baby born with a cleft lip or palate. What happens when baby goes for first operation, sharing what parents need to know.
Feeding, Hearing, Eating and Speaking
As children grow, sharing the family experiences with challenges that children can have as they grow, with the sounds of children learning and growing.
Films for Children
Palate Investigation Clinic (PIC)
A film to support children and families with what they can expect when they attend the PIC. This could feature childrens experiences and a scripted narrative to let them know what they need to know.
Alveolar Bone Grafting
Aimed at children aged 7+, the film will share the real experiences, emotions and advice from other young people about having the ABG operation, with a scripted narrative to lead them through what they need to know.
Call for support
We inviting clinical networks, hospital charities and cleft charities to join our partners along with funding Trusts and Foundations and Individuals, to join support to create an impactful and engaging series of films and resources that are available for all.
ForMed Films Explore experience of health, sharing real journeys in impactful animated films. We are an award-winning team, making films for social good. Have a look around our website to see other resources that we have made. If you have any questions or suggestions about the cleft project or anything else, please do get in touch!