The Clinical Nurse Specialist is usually the first expert that the parents of a baby with a cleft lip and/or palate will meet. In the UK, this first meeting may be after diagnosis at the 20 week scan. The Nurse Specialist will guide them the parents through their ante-natal journey and prepare them for their baby’s treatment plan.

Once the baby has been born, he or she may have difficulties feeding and this is another area of expertise that the Nurse Specialist can help with, first by carrying out a feeding assessment and then by teaching breast feeding techniques that are unique for babies born with a cleft lip and/or palate. Later on, the nurse is also able to offer advice on weaning and to check that the baby is growing well.

The Clinical Nurse Specialist is an essential member of the multi-disciplinary team that treat children born with cleft lip and/or palate in the UK, from birth through to adulthood. The role of the nurse may be seen differently in some lower and middle income countries but at the Sheikh Hasina National Institute for Burns and Plastic Surgery (SHNIBPS), an enthusiastic and capable team of nurses are learning the ropes and are paving the way for others. Pictured below with Prof. Kalam and Mr Brian Sommerlad are nurses Mst. Anonna Badhon, Taslima Akter, Zannatul Ferdous, Farjana Akter and Hafija Haque Mita.

Helen Robson, Clinical Nurse Specialist in cleft care at Great Ormond Street, London, travelled to Bangladesh this January with colleagues to deliver workshops in their various areas of expertise. Helen’s workshops were not just for the dedicated nurses on the cleft ward but to a wider group of nurses who were all interested to learn more. Helen also delivered a seminar at the 3rd Comprehensive Cleft Care Workshop that was held during the team’s visit to Bangladesh.

Pictured below left, Helen advises a new patient on feeding. Feeding is a very important role of the cleft nurse specialist to ensure that babies born with a cleft lip and palate are able to thrive and grow. Helen was particularly keen to teach the nurses that breast milk feeding is possible alongside the World Health recommendations. She found it particularly useful to be able to meet with parents  and discuss various options with the nurses as well as explore the parental experience as part of the workshop. The photo below right shows another workshop in progress.


During Helen’s visit, she was also able to visit one of the patients at home. This outreach scheme  works well in some parts of the UK and is a model that CLEFT would like to help the team in Dhaka develop, especially as some of the very rural areas of Bangladesh have limited access to medical care. A nursing outreach programme would allow babies born with a cleft lip and/or palate to access the care they need and would provide practical support, particularly with feeding, to those who need it most.

Little Sulaman (banner image) had been operated on by the UK team alongside the local team at the SHNIBPS Cleft and Craniofacial Centre just a few days before Helen’s visit to his family home, and he was recovering well when Helen saw him with his parents, siblings and wider family members. Pictured below is Sulaman with his parents and brother (left) and Helen talking to the whole family about feeding (right).


Sulaman’s family were very welcoming to Helen who visited with colleague, orthodontist Chloé Rolland. They were also open about their thoughts why Sulaman was born with a cleft. One of the myths in Bangladesh is that a baby is born with a cleft because the mother carried out work, possibly chopping (vegetables, for example) during the Equinox whilst she was pregnant. Indeed, Sulaman’s mum thought this was the very reason for his birth defect. It is not just in Bangladesh where such beliefs are accepted but in the UK too, there are myths around why a baby might have been born with a cleft lip and/or palate – and there are many more myths in other countries around the world.

During the 3rd Comprehensive Cleft Care Workshop, Helen’s seminar on ‘Feeding of a baby with a cleft’ gave the other specialties involved in cleft care an opportunity to ask questions around this important subject. Pictured below, Helen (centre right) at the end of one of the nursing workshops.