What is a cleft? A cleft is a congenital birth defect. Expand There may be a cleft (split) just of the lip, just of the palate, or both. They can be one-sided (unilateral) or double sided (bilateral). Unilateral cleft Bilateral cleft
Brian Sommerlad, Consultant Plastic Surgeon and Chair of Trustees For over 40 years, I have been involved in operating on babies, children and adults who have been born with cleft lip and/or palate. Expand Although I have now retired from the National Health Service, I continued to operate both in the UK and in many countries abroad. As a plastic surgeon, I have been involved in many aspects of surgical reconstruction. However, I have increasingly focused on the challenge of trying to improve results in surgery for clefts. I have been aware of the lack of good quality data on techniques and outcomes and have tried to make some contributions in these areas. Travelling to many countries has convinced me of the need to try to help in improving care for children born with clefts in resource-poor countries. Most efforts by charities rely on flying in western teams for short visits or paying local surgeons to carry out the operations in private hospitals. Neither of these approaches builds for the future. If these NGOs disappeared, they would have had a negative impact in the long-term. In 2007, with Maddie Holmes (grandmother of a patient) and inspired by John Kettleborough (an ex-patient) we set up the charity CLEFT, with the aim of funding research to be carried out by the North Thames Cleft Team in Great Ormond Street Hospital for Children and the St Andrew’s Centre, Broomfield Hospital, Chelmsford, and also to support cleft lip and palate teams in resource-poor countries such as Bangladesh, Sri Lanka, Uganda, Egypt and Kurdistan. We have achieved a lot but there is much more to be done – helping to bridge the gaps in knowledge about the causes and treatment of clefts and trying to bridge the gaps between treatment in countries like the UK and countries like Bangladesh. In addition to being the current chairman of CLEFT, I am currently trying to split my time between looking after my own patients, regularly visiting the centres that we support overseas, and also keeping in touch with my own family of five children and currently fourteen grandchildren. It would be better if there were more hours in the day and more days in the year! http://www.sommerlad.co.uk/
Why do clefts happen? We do not know yet why clefts happen - in some case there is a genetic link. Expand In many cases we do not yet know. In some case there is a genetic link. This is one of the major areas that we are researching. The gene involved in Van Der Woude syndrome (a cleft-related condition) has already been identified.
Mark Dwyer My son Edward was born with a unilateral cleft lip and palate, and has been cared for by the GOSH team since he was born in 2010. Expand I was invited to become a trustee of the charity in 2011 after attending a presentation at Great Ormond Street and saw an opportunity to give something back and to help create sustainable improvements for those in developing countries where little or no care is available, and ongoing care is rarely available. A very important part of the CLEFT mission is to encourage lasting improvements in developing countries by providing training and equipment for local medical staff to provide care to cleft patients from childhood to adulthood rather than by flying in Western surgeons to provide primary care without focusing on follow-up care. As the parent of a child with a cleft, I was also keen to help support research into improvements in care and into the causes of clefts, which does not receive funding from pharmaceutical companies.
Gwyneth Sommerlad The charity has been part of my life since it began more than 10 years ago. Expand CLEFT has been an important part of the life of our whole family and their friends. All have been involved in some way – running, cycling, helping with the website and being part of the concerts and other events. My two visits (self-funded as are all trustees’ trips) to Bangladesh have helped me to understand how important is the project there and shown me how much the staff and patients in Dhaka Medical College Hospital appreciate the work of CLEFT.
Are there any other conditions associated with clefts? There may also be other associated conditions. Expand For instance, in a condition known as Pierre Robin Sequence, the palate is associated with a small jaw, making breathing and feeding difficult. In a condition known as Stickler’s syndrome is a subgroup of Pierre Robin Sequence and, there may be associated eye abnormalities, which can lead to retinal detachment and even blindness if not treated. A condition known as 22q11 deletion syndrome (or velocardiofacial syndrome) is frequently associated with a cleft palate or a poorly functioning palate which may not actually be cleft. This has been a major area of research for CLEFT. Please click here to find out more information about 22q11 deletion syndrome. In another condition, van der Woude syndrome (where a cleft may be associated with pits in the lower lip), we now know the gene involved.
Janette Hollingbery Chair of the International Ambassadors group. Expand I think CLEFT is a wonderful charity because I know it has such an impact on people’s lives. CLEFT is important to me because it is researching the causes of and cures for CLEFT. One of our children was born with a cleft lip, so we would find it interesting to know more about what caused it. In some countries the access to cleft repairs is limited and so CLEFT is helping to train up doctors and to supply equipment to help out people who would otherwise be outcasts in their society. I have been inspired by the work of Mr Brian Sommerlad, who helped to start up CLEFT, and was happy to get involved. I have been a Trustee for a few charities so I know how difficult it is for small charities like CLEFT to raise money. I have a background in working with small businesses and various types of charities, so I try to contribute where I can. I split my time between London and Hampshire, which I can do now that all our three children are adults. I grew up in the USA and have lived in Britain half my life,. I can see the value of a National Health system, and supporting valuable research and those less fortunate. I have a an MBA from the Wharton Business school at the University of Pennsylvania and BA in economics from George Washington University.
Richard Allan I became aware of CLEFT through discussion with Brian Sommerlad and was invited to become a trustee. Expand I am particularly interested in the work that our charity does overseas and have travelled to Bangladesh five times. It has been enormously satisfying to see the comprehensive cleft care centre in Dhaka developing and to get to know the key people involved. Much has been achieved, but there is so much more to do.There is the prospect of establishing other centres along similar lines. Sustainability is of paramount importance and this cannot be achieved overnight. Our charity sets itself long term goals so we need to continually plan ahead. I come from a business background and have wide experience in several industries. I hold a masters degree in business administration and have chaired audit committees in a number of major organizations. Helpful when producing action plans and budgets for our overseas projects.
How do clefts happen? In the womb, the upper lip develops from three parts and the palate develops in two halves, which then join in the middle. Clefts happen when they fail to join normally. Expand The process of the joining of the gum and lip begins behind the gum at about 6 weeks after conception. If it does not happen, there is a complete cleft of the lip and gum. Sometimes, if the process of joining begins and is not completed, the gum may not be affected. The two halves of the palate join at about 8 weeks and this process, too, may be partial or complete so that clefts may just involve the soft palate or the hard and soft palate.
How frequently do clefts happen? We know that in the UK one in 700 babies are born with a cleft. Expand The figure is higher in Asia and particularly so in people from the Far East. It is estimated that 250,000 babies throughout the world are born each year with a cleft.
What are the physical effects of cleft lip and palate? Children born with a cleft may suffer from speech and hearing problems. Expand Patients may need many procedures to achieve a satisfactory result. These will involve stays in hospitals and may be painful and traumatic – not just for the patients but also for those who care for them. However, other patients have good results after a minimum number of operations. This may be because of the quality of surgery but there are other factors – some of which we don’t yet understand. In the developing world, where cleft patients are frequently not operated on until later in life (if at all), they may be malnourished, unable to talk well or hear properly and will often be social outcasts.
Can clefts have psychological effects? In 21st century society, where looks seem to be paramount, ‘looking different’ can cause a severe sense of insecurity and inadequacy. Expand Children with clefts are often bullied which can lead to a lack of confidence and falling behind at school. If the child or adult has a speech impediment caused by their cleft this can lead to difficulty with communication and associated feelings of inadequacy and isolation through shyness or inhibition. However, with speech therapy and supportive parents most children with clefts in the UK enjoy a happy, secure childhood.
Marie Pinkstone I am delighted and honoured to be a trustee of CLEFT. CLEFT is a charity that represents my values and commitment to research and treatment for patients and families affected by cleft. Expand My background is Lead Speech and Language Therapist for the North Thames Cleft Service based at St Andrews Hospital in Chelmsford and Great Ormond Street Children's Hospital. I have worked in the service following its establishment in 2002 and have been working in the field of cleft lip and palate since 1997. My clinical speciality as enabled me to support CLEFT projects in Uganda, Ghana and in Bangladesh. Through working in new and challenging environments I have seen first hand the positive impact that Cleft brings to the patient journey with every penny raised influencing patient care and research. My focus is to improve all patient experience and clinical outcomes.. a focus that is shared with my fellow board members.
Norman Hay I was honoured to be invited onto the board of trustees for the cleft charity a number of years ago. Expand Joining the charity was an easy decision, as I felt the underlying ethos of the charity aims in aiding the delivery of local sustainable cleft care in middle- and low-income countries as well as supporting cleft related research reflected what I am passionate about. My involvement with world of cleft started back in 1990, when I first started attending cleft clinics with Brian Sommerlad and David Di Biase, both my trainers and mentors. Their energy and enthusiasm was an inspiration to me. I was appointed as a consultant cleft orthodontist at Great Ormond Street hospital back in 2003 and I am currently the clinical director for the North Thames cleft service. Since my involvement with the charity, I have been lucky enough to travel to meet local clinicians in Uganda, Egypt, Bangladesh and Venezuela where we have engaged together in the delivery of cleft care for the local population and shared the opportunity for teaching and training. The allegiances formed have also allowed us the opportunity to invite overseas clinicians, to our units in the UK, to shadow various specialities and help highlight the delivery of our holistic team approach. Finally, I have to be thankful to the charity for renewing my enthusiasm for cycling, when I was encouraged, back in 2016, to join the London 100 fundraiser and haven’t looked back!
Kaye Knowles I live in West London with my husband, Peter. We have two sons, David & Andrew. Expand My career has included many years as a professional violinist (BBC Philharmonic, Bridge String Quartet) and as a violin then classroom teacher. I now teach Dalcroze Eurhythmics at the Guildhall School of Music and Drama on their String & Brass Training Programme and for Dalcroze UK on the Teacher Training programmes as well as on courses all over the world. I was born with a cleft lip and palate and first encountered CLEFT runners in 2014 at the Royal Parks Half Marathon. That year I ran for Great Ormond Street Hospital charity, which is where I received my treatment. This included over a dozen operations. In the following year, 2015, I decided to raise money for CLEFT. I then volunteered to run the Uganda Marathon in 2016 and raised over £2,000 for the charity. I am keenly aware of how privileged I am to have had my cleft repaired by the very best surgeons and how this has allowed me to lead a normal life! My experience in Uganda was a sharp reminder of what can happen when superstition and lack of education are the norm. I have been moved at how cleft charities have literally given people the opportunity to have a life.
Debbie Sell, Senior Research Fellow/ Speech and Language Therapist Dr Debbie Sell is a Senior Research Fellow at Great Ormond Street Hospital and until 2018, Speech and Language Therapist in the North Thames Regional Cleft Service. Expand Previously in managerial and leadership roles in GOSH, Debbie now focuses on research, mentoring, supervision, teaching and independent clinical practice. Her PhD study in Sri Lanka (speech in patients with unoperated and late operated cleft palate) led to its Speech and Language Therapy training course. She has led on developing and testing speech outcome tools in cleft palate/VPI, setting standards for measuring speech outcomes and has participated in several multicentre national and international studies of speech outcome. Debbie’s current interests are parents undertaking articulation therapy in children with cleft palate supported by therapists and technology and is a Founder and co-Director with Dr Triona Sweeney of Speech at Home. CLEFT - Bridging the Gap funded the GOSH arm of the P.L.A.T. randomised controlled trial and was really fantastic at helping secure funding for the devlopment of the Speech@Home website. If you would like to listen to Debbie reflecting on research into speech and language therapy, please click here. [email protected]; [email protected] Twitter @debbie_sell
Phil Stanier, Research Scientist I am a research scientist with a particular interest in studying the molecular and genetic basis that leads to a cleft of the lip and/or palate. Expand I joined UCL’s Great Ormond Street Institute of Child Health in 2006,which was an ideal opportunity to work closely with the North Thames Cleft team. Understanding the causes of cleft lip and palate is highly complicated since it involves many different genes and environmental risk factors, that sometimes interact together. My team, in collaboration with many researchers worldwide, have uncovered some of the key genetic and epigenetic factors that can lead to a cleft. We continue to try to understand how these impact on normal fetal development with a view to improving diagnosis, treatment and prevention. I have been closely involved with the CLEFT charity as a member of the Research Steering group since 2007.
Raouf Chorbachi, Consultant Audio-Vestibular Physician Dr Chorbachi is Consultant Audio-Vestibular Physician for the North Thames Cleft Services at Great Ormond Street Hospital and St Andrew's Centre, Broomfield Hospital in Chelmsford. Expand
Emily Anderson, Clinical Geneticist I first heard about the charity CLEFT through Mr Brian Sommerlad, who operated on my cleft lip and palate when I was a baby and I subsequently became a trustee in 2012. Expand I ran the Royal Parks Half Marathon for CLEFT in 2009 and I subsequently became a trustee. I have been involved in encouraging other young people to support the charity and I have also visited Bangladesh to see the challenges in providing comprehensive cleft care there. Having qualified as a doctor in 2012, I have now chosen to specialise in genetics. My own experiences, as a patient and as a doctor, mean I am particularly keen to support CLEFT’s work, both in research as well as overseas.
What is a submucous cleft palate? A submucous cleft palate is a variety of cleft palate where the palate may look relatively unaffected but the muscles that lift the palate for speech are abnormal. Expand The classical signs of a submucous cleft are that the uvula (the dangly bit at the back of the soft palate) is split, there is a bony gap at the back of the hard palate and the midline of the soft palate may look very thin - translucent. However, not all have these classical signs. Submucous clefts may not be recognised at birth. If not they may be diagnosed at a later age because: There may be feeding difficulties in infancy Speech development may be delayed and speech nasal Hearing may be affected and the diagnosis made by an ENT surgeon Sometimes after adenoidectomy which may be done to improve hearing. The adenoids on the back of the throat camouflage the fact that the palate is not functioning normally and the speech becomes nasal when they are removed. Sometimes they are discovered as an incidental finding. Not all submucous palates cause problems with speech or feeding. The diagnosis can be confirmed by investigations such as lateral videofluoroscopy and nasendoscopy. If surgery is indicated, this usually involves an operation to correct the muscles of the soft palate. Sometimes a second operation is needed if the first is not completely successful.
What is Velopharyngeal Insufficiency? In the normal palate, the muscles of the soft palate (velum) are responsible for closing the velo-pharyngeal opening (the opening between the palate and the pharynx – the back wall of the throat). Expand This is essential for normal speech and to prevent regurgitation of food and fluids through the nose. We know that in the UK, the velopharyngeal opening will not close properly in 25% of patients who have a repaired palate – this is called velopharyngeal insufficiency (VPI).
Matt Fell I am excited to work with the CLEFT charity team, as part of the UK’s collaborative effort to help improve cleft care in the UK and overseas. Expand I am the Cleft Surgeon at the Welsh Centre for Cleft Lip and Palate. I have an Honorary Fellowship position to perform epidemiological cleft research with the Cleft Collective at the University of Bristol. Being able to contribute to global cleft care has always been very important to me. Being involved with CLEFT allows me to work amongst a great team to help improve the provision of cleft care for patients and their families living in resource-poor settings. If you would like to listen to Matt examining the problems of inequalities in access to cleft care in lower income countries, please click here.
Bruce Richard Consultant Cleft Surgeon (retired). Expand I lived in in Nepal for 11 years, (1989-1999) where I set up a Plastic Surgery Department for the Government of Nepal, trained 7 Nepalese surgeons in Plastic Surgery, initiated a Randomised controlled trial in Cleft surgery, and investigated the facial nerve in leprosy. My passion was working with Nepalese colleagues to improve outcomes for the people of West Nepal. For the last 19 years, I have been a Consultant Cleft surgeon in Birmingham, developing the cleft service, teaching Plastic surgery, supporting national Cleft Audit, and initiating several cleft clinical research projects. I continue with 2 PhD students that I co-supervise on computer artificial Intelligence projects developing a better cleft aesthetic outcome measure and investigating why some children’s midface does not grow sop well after cleft surgery. The CLEFT International Charity objectives, completely encapsulates my passion for development and sustainability of improved Cleft care in Low and Middle Income Countries by the ethos and methodology stated in the Mission Statement. I would like to help those objectives become more of a reality. If you would like to hear more from Bruce about his experiences of working and living in Nepal, please click here.
Rona Slator, Chair of the Research Steering Committee Retired, and living in the North Yorkshire countryside. Former Consultant Plastic and Cleft Surgeon at Birmingham Children’s Hospital and the West Midlands Cleft Lip and Palate Centre. Expand I was a student for a long time. I particularly enjoyed and learned from my research degree the excitement of knowing a small area in great depth and the results of experimental studies. As a medical doctor, initially very early in my postgraduate career, I was inspired by both the cleft surgery of Brian Sommerlad, and by his enthusiasm for auditing outcomes. I have been passionate ever since about knowing more about how well treatments for cleft lip and palate work. I was on the Steering Group of the James Lind Alliance Cleft Lip and Palate Priority Setting Partnership, the first Chair of the Cleft and Craniofacial Anomalies Clinical Studies Group, and President of the Craniofacial Society of Great Britain and Ireland. During my time as Chair of the CCC CSG we started the Early Careers Researcher Group. I was Clinical Lead of the West Midlands Cleft Service for many years, and Chair of the Cleft Clinical Directors Special Interest Group. I acted as the local PI for international cleft research projects, and encouraged research and audit within the West Midlands Cleft team which has led to a number of collaborations and publications. Funding for cleft research has always been hard to find. I welcome the chance through CLEFT: Bridging the Gap to continue supporting research into improving the lives of children and adults affected by cleft lip and palate. There are so many fascinating areas where we still know so little. If you would like to listen to Rona talking about the value of research to cleft professionals and patients, please click here.