Elsie before surgery when she was seven months old
The Keen family
Elsie after her third surgery before her fifth birthday
The Keen family
Press release issued:
8 November 2022
One of the largest research programmes in cleft lip and palate in the world, The Cleft Collective, is celebrating after recently welcoming its 10,000th participant to the study. Led by the University of Bristol, this UK-wide study of children born with a cleft lip and/or palate (a gap in the lip and/or the roof of the mouth) is collecting data which can be used by researchers here in the UK and across the globe to investigate the causes of cleft and the best treatments for it.
One in 700 children are born with a cleft of either the lip or palate or both. In the UK, these children are treated by specialist cleft centres in hospitals with additional support from community-based services. They may have multiple operations throughout their lives and receive support from specialist nurses, surgeons, psychologists, speech and language therapists, audiologists, dentists, and orthodontists, from birth until at least age 20, with cleft services available throughout adulthood for those who need it.
The study has been running for ten years, funded by The Scar Free Foundation, and has recruited over 3,500 children as well as their parents and other children in the family. Genetic information from saliva and blood samples has been collected as well as thousands of questionnaires. New funding from The Underwood Trust will allow the study to continue for another five years enabling more families to participate and children born with a cleft to be followed up for longer. This will help the Cleft Collective team understand how their cleft and the treatment they receive makes a difference to their lives, with a particular focus on their speech, their appearance and their well-being.
The Cleft Collective’s 10,000th participant is five-year-old Elsie. Elsie was diagnosed with a bilateral cleft lip and palate at her mother's 20-week scan.
At seven months Elsie had her first operation to repair the cleft in her lip. Four months later, she had surgery to repair her palate, using skin from inside her cheeks to help form the roof of her mouth. A month before her second birthday, she had a third operation to reconstruct her top lip.
Elsie and her family were asked to join the Cleft Collective Study when they attended their regional cleft centre for Elsie's five-year review appointment just after her fifth birthday.
Robyn, Elsie's mother, said: "Elsie and I are grateful to the NHS and the wonderful team of doctors, nurses, speech and language therapists, dentists and psychologists, who have helped Elsie so much and who continue to do so. Donating saliva for research, will not change my daughter’s journey, but it may help her get answers to why she was born with a cleft.
"I hope as many families as possible come forward to take part in the study, to see if something can be learned. It’s great that funding has been granted to try and find answers, and I feel as a parent, helping with research is a way of giving something back to the cleft community, and to say thank you too."
Dr Yvonne Wren, Chief Investigator of The Cleft Collective Cohort Study and Associate Professor in Speech and Communication in the Bristol Dental School, added: "Thanks to funding from the Underwood Trust, our important cleft research will continue. We are grateful to all our participants, who are the heart of the study, and the NHS teams who help us with the study as well as the Scar Free Foundation who funded the important start of the study and first ten years.
"Parents of children born with cleft lip and/or palate want to know why their child has a cleft, which interventions will have the most impact and how it will affect them in later life. The Cleft Collective data will be used to help provide answers to their questions."
If parents are interested in joining the study, please email cleft-collective@bristol.ac.uk or contact their local cleft team.
Further information
Case study: Cleft Collective’s 10,000th participant - Elsie and her mother, Robyn
Elsie was diagnosed with a bilateral cleft lip and probable cleft palate at the 20-week scan. Robyn and Jonathan, Elsie’s parents, do not have anybody on either side of the family with a cleft.
Robyn and Jonathan were invited to a meeting with the cleft team at their nearest regional cleft specialist hospital before Elsie was born, where a nurse answered all their questions and showed them pictures of children before and after surgery. However, there were still a lot of unknowns, that could only be answered once Elsie was born.
Elsie came into the world three weeks early, due to placental issues. She was taken to the Neonatal Intensive Care Unit, where she was checked over and a nasogastric tube for feeding was inserted. Elsie was not born in the regional cleft specialist hospital, but the cleft specialist nurse visited the morning after the birth and provided advice to Robyn and the maternity ward staff on feeding and other challenges relating to having a baby with a cleft.
Elsie had her first surgery, a lip adhesion, at seven months. By this point Robyn and Jonathan had grown used to her smile and they thought it would take time to adjust to the change in her appearance, which would follow the operation. Four months later, she had her second surgery to repair her palate. For this surgery, skin was used from inside her cheeks to help form the roof to her mouth. This surgery was vital for Elsie to develop speech. A month before her second birthday, she had her third surgery to help reconstruct her top lip. It was this surgery, that made a significant difference to her appearance.
Elsie is now in Year 1 at school and thriving. She is well known in her local community for always talking and for her smile. As she grows, Elsie will require further surgery and also orthodontic appointments, but her family are positive about the future and their ability to deal with this.
About cleft lip and/or palate
Around 1,200 children are born with a cleft lip and/or palate in the UK each year. They have up to three operations in the first year of life with, on average, 3.2 admissions and 13.2 days in hospital before the age of two. Routine care continues until age 20 and some people need treatment in adulthood.
About the Underwood Trust
The Underwood Trust was created on 1 July 1973. The name derives from Underwood Lane, Paisley, Scotland, which was the childhood home of one of the founders.
Our aims are to fund a wide range of activities that will positively impact individuals and the environment. We award a number of grants per annum to organisations that both share these aspirations and have the ability to deliver on their programmes.
About the Scar Free Foundation
The Scar Free Foundation is a medical research charity, chaired by Professor Sir Bruce Keogh (former National Medical Director of NHS England), whose mission is to achieve scar free healing within a generation and transform the lives of those affected by disfiguring conditions. Founded in 1999, The Scar Free Foundation has supported over £25 million of life changing research into wound healing, reconstructive surgery, burns and cleft research
About the Cleft Collective
The Cleft Collective cohort studies investigates the biological and environmental causes of cleft, the best treatments for cleft and the impact of cleft on those affected and their families.
In the future our research will help answer the three key questions that families ask:
- What has caused my child’s cleft?
- What are the best treatments for my child?
- Will my child be OK (both now and in the longer term)?
