CLEFT: Bridging the Gap

Without the support of charitable trusts and foundations, we simply couldn't continue our vital work - improving the lives of children born with cleft lip and palate.

If you represent a grant-making body who would like to know more about the work of CLEFT, please email Melanie Baldwin. We would be delighted to discuss our work with you and explore how your support can change the lives of children born with cleft lip and palate.

Today, 1 in 700 babies in the UK are born with a cleft lip and palate, the most common form of birth defect.

The impact on a child’s life as they grow is profound. Typically, they will need at least four operations. They may also require ongoing tests, treatment or therapy. It will affect the way they look but also their speech, hearing and dental development. It can leave deep psychological scars.

In the developing world, patients with clefts are frequently not operated on until later in life, if at all. As a result, they may be malnourished, and unable to talk well or hear properly. Often, they will be social outcasts.

At CLEFT, our vision is of a future where clefts are preventable. Until we get there, we want to improve the lives of those born with cleft lip and palate.

Clefts occur when the upper lip, gum or roof of the mouth fails to join normally when a baby is in the womb. We do not know much about why they occur, though it is likely to be due to a combination of genetic and environmental factors. We know some of the causes, such as the tongue preventing the two halves of the palate from joining, but in most cases there is no obvious explanation.

CLEFT and our founder, Brian Sommerlad

CLEFT was established in 2007 by leading cleft surgeon, Mr Brian Sommerlad and the grandmother of a patient. Brian has been operating on babies, children and adults born with cleft lip and/or palate for the last 40 years. Now retired from the NHS, Brian continues to operate both in the UK and overseas and is widely regarded as a pioneer in his field. During his years as Consultant Plastic Surgeon and Director of Cleft Services at Great Ormond Street Hospital (GOSH), he forged relationships with world-leading cleft practitioners that continue to help CLEFT’s work today. Now Chairman of CLEFT, Brian oversees the charity’s Research Steering Group and encourages clinicians to push the boundaries of research into clefts. Thanks to its generous supporters, CLEFT has made many significant contributions, not just into why clefts happen but also, importantly, into how they are treated. 

Our approach

CLEFT’s mission is to bridge the gap in cleft care and knowledge. Our research is already improving the treatment and outcomes for children born with a cleft, so that they can lead happy and fulfilling lives. We do this by drawing on some of the world’s best clinicians in cleft care, in particular through our ongoing relationship with the North Thames Cleft Centre, created by Great Ormond Street Hospital and the St Andrew’s Centre, Broomfield Hospital, Chelmsford.

Our research strategy focuses on three key areas:

1. To better understand the likely causes of clefts;
2. To find new and kinder treatments and surgery to repair the cleft;
3. To improve the speech of children who have had cleft palate repairs.

1. Better understanding the likely causes of clefts

We are ever closer to identifying the genes responsible for congenital abnormalities. One piece of the jigsaw fell into place after CLEFT funded researchers carried out a five-year study on a rare disorder of palate development in a family in Egypt. They realised that the family history could be highly significant and undertook a project to examine the family’s genes. They have since been able to identify the cause as a variant in a gene called FOXF2.

2. Finding new and kinder treatments and surgery to repair the cleft

Our research into the significance of muscle abnormalities in the cleft soft palate has led to advances in the techniques used to repair them. These techniques have been found to improve speech considerably – potentially better than in any other settings worldwide.

We also funded a study to understand the long-term outcomes in patients treated by a single surgeon. This showed that new surgical protocols for a baby’s first operation could reduce the need for further intrusive surgical interventions as the child grows. The results are also quicker, with a marked improvement in speech, so that the child requires less long-term therapy. Overall, the study showed that this is a kinder and more efficient approach, now increasingly used around the world.

3. Improving the speech of children who have had cleft palate repairs

We want children to be able to live a normal life and not be impaired by a cleft palate. Speech and language abnormalities are among the most challenging problems faced by patients who have had cleft palate repair. About two thirds of children born with a cleft palate require speech therapy in combination with surgery. Even in the UK, therapy provision in the community is inconsistent and it can be very difficult to get enough or appropriate ‘cleft specific’ therapy.

CLEFT is supporting a new method of speech therapy, called Parent Led Articulation Therapy (PLAT). We are part-funding a randomised controlled trial with Great Ormond Street Hospital, London and Temple Street Hospital, Dublin, to find out whether it is possible to train parents to work on their child’s speech difficulties, supported by a team of therapists and technology. The potential of this project could transform the way speech therapy is provided, as well as having significant implications for overseas countries where little or no speech therapy support is available.

Our research breakthroughs

We can and must do more

A cleft lip and/or palate continues to be the most common birth defect. Children’s physical and emotional well-being continues to be at risk and the cost to the NHS for a child’s lifetime care is considerable.

Despite our successes, there is still much uncertainty about the best techniques for surgical treatment of clefts and the results are far from perfect. There are also limited research funds available from the NHS and the pharmaceutical industry. Cleft research has not been a priority because it is not seen as life threatening. It is, however, critical to quality of life, so charitable support has been and remains crucial to progressing research to help cleft patients.

By funding research, we are seeking to provide answers to currently unanswered questions, such as:

• Can we identify which genes have a role in clefts?
• Why do so many cleft palate operations fail to produce a fully functional palate?
• Does the technique of repair of the muscles of the palate reduce hearing loss in children with clefts?
• Why do so many cleft palate operations fail to produce normal speech?
• What are the dental anomalies in different types of clefts and how can they be best treated?

Further insights and better understanding will be critical if surgeons, speech therapists and other medical professionals are to provide improved, long-term treatment and care for all people born with clefts.

We are now reaching out to our supporters and beyond to fund further research to change these children’s lives – now and long into the future.

 

Our current priorities

CLEFT has funded many projects that have yielded positive results and helped to transform clinical care. We want to continue to improve treatment, while also seeking to fully understand the causes of clefts so that we find a way to prevent them from happening at all.

Our current funding priorities include:

• Understanding the causes of a cleft lip and palate

With your support, we will conduct a study of clefts in Bangladesh to explore the causes and the effects of having a complicated cleft. We will look at the pattern of deformity, the difficulties in managing the palates in these patients, and the associated psychosocial implications. By comparing findings with data collected in the UK, we also hope to understand why clefts are more common in Bangladesh and to gain valuable broader insights into the causes of clefts.

Cost: £8,500 over 12 months

• Improving primary surgery outcomes

We know that the better the primary surgery performed on a baby the less secondary surgery, such as jaw advancement or further palate surgery, will be needed. To explore this further, we will undertake a study of the long-term effects of specific surgical interventions on areas such as appearance, growth of the upper jaw, speech, hearing and psychosocial outcomes. This study will specifically look at outcomes following a vomerine flap repair, which uses the vomer bone (one of the facial bones) to reconstruct the palate and cover the cleft.

Cost: £22,000 over 4 months

• Improving the speech of children who have had cleft palate repairs

We will conduct an in-depth study to reassess palate function in relation to speech functionality. By reassessing muscle anatomy and function in both normal and cleft palates, this research will help us to improve surgical techniques to deliver improved speech outcomes.

Cost: £149,000 over 3 years.

• Building closer relationships between clinicians and scientists to prevent clefts

The prevention of clefts – our ultimate goal – relies on pooling interdisciplinary expertise, time and knowledge to advance effective clinical research. Our biggest and most immediate priority therefore is to employ an expert Director of Research, to be based at the UCL Great Ormond Street Institute of Child Health. This role will have the capacity, remit and resource to coordinate and better harness the enormous wealth of knowledge and experience in genetics, molecular biology, stem cell therapy and other areas at UCL.

In particular, this role will maximise the potential for joint research between the clinical cleft team and the scientific staff, making best use of their existing geographic proximity. They will also help to lessen the research burden on busy clinicians, who may currently find it difficult to initiate, develop and complete clinical research projects. With your support, this person can help to unlock the huge cleft research potential that exists across UCL and its clinical partners. They can be the vital piece of the jigsaw that helps us both find the causes of and prevent clefts.

Cost: £600,000 over 5 years.

 

Join us

Thanks to philanthropic support, we continue to make headway into understanding why clefts occur and to pioneering new treatments that deliver kinder, more effective and more efficient care for children with cleft lip and palate.

We keep our running costs very low, ensuring support goes where it is intended. The day-to-day cost of running the CLEFT office is already provided by a generous donor, as was the printing and supply of our branded stationery and leaflets. Without the commitment and vision of all the people who have donated these things and more, the money that we receive from our supporters and fundraisers would not go as far as it does.

Each donation takes us a step closer to reaching our goal. All gifts could have a direct impact on changing the lives of many hundreds of thousands of babies and children around the world.

Please join with us and help us prevent clefts for future generations.

Our daughter, Ella, was born in 2014 with Pierre Robin Sequence and a severe cleft palate. We are eternally grateful for the research that CLEFT has done and continues to carry out as our daughter’s operation at only ten months old was a fantastic success. Her progress since then has been nothing short of remarkable and this is due in no small way to the work the team have done in the ensuing years. 

The research into genetics is a vital part of understanding why these things happen in the first place and is the key to helping children of the future benefit in the same way that Ella has. Her journey is at the heart of our support for CLEFT research.

Lindsay Shillitoe