In May 2015, I undertook a short consultancy that involved providing some very basic feeding training in three state orphanages (commonly called baby homes) in Tajikistan.
The training aimed to prevent staff feeding babies lying down as opposed to sitting up which is dangerous for obvious reasons (food/drink is far more likely to go down the trachea and puts the child at a much higher risk of chest infections, pneumonia, aspiration and over time, possible death). Amongst the range of children in the orphanages, I noticed underweight babies with unrepaired cleft lip and palate who had recently been signed into the baby homes. Enquiries into why this happened revealed that parents often signed their babies into state care because they were struggling to know how to feed them, the baby had lost weight and parents felt signing the child into state care was the best thing they could do.
Although there is no pathway of care for this client group in Tajikistan, a surgical theatre has been built in a local hospital in Dushanbe by Dr Martin Kamp, a German surgeon who flies in twice a year to carry out repair operations. Dr Kamp has also trained a few local Tajik surgeons. Information about the surgery is available through a small parent support group for cleft lip and palate, however, it is hit and miss whether families hear about it, especially if they live in the countryside. Cultural barriers (for example, disability being seen as a punishment and/or as a source of shame) to having surgery are also a source of difficulty. Operation Smile and Smile Train do not currently have a presence here.
So I approached the British Embassy in Dushanbe with a proposal to deliver specialist feeding training for babies with unrepaired cleft lip and/or palate to a range of health care professionals here in Tajikistan. Once the funding was approved in September 2016, I was able to recruit Emma Southby, Training Manager for the European Cleft Organisation (ECO). Prior to taking on this role last year, Emma was a lead Cleft Nurse Specialist at St Thomas’ Hospital in London for sixteen years. Emma also has experience of developing a network of nurses trained in early cleft care in Bulgaria and delivering training in early cleft care across Europe over a period of ten years. The advertisement of our small project in Tajikistan was timely in that the ECO had just decided to try and work with countries outside the European Union.
It took 5 months to obtain the formal permission from the Tajik government to deliver this training. I am happy to report that the project finally delivered x2 two day courses of training run by Emma Southby in August 2017. Fifty-two participants were formally recruited by the Ministry of Health in Tajikistan. representing health professionals from 3 cities covering the north, central area and south of Tajikistan (Khujand, Dushanbeand Kurgon Teppa). We also included a live demonstration of a feeding assessment on each course with babies / young children with unrepaired cleft lip and/or palate and their parents. The training was also attended by senior representatives from the Tajik Ministry of Health.
Informal feedback from the course participants indicated they were highly aware they lacked knowledge in how to support babies / young children with unrepaired cleft lip and palate and their parents in safe and appropriate feeding and weaning. Low weight is a significant barrier to secondary operations (closure of cleft palate) and these are often significantly delayed. Inevitably, this also results in a negative impact on the development of a child’s speech and language skills.
The project also identified that changes in Tajik law are required to fully implement the feeding training as, at the moment, medical staff run the risk of a two-year prison sentence if they do not promote breastfeeding at birth. Similarly, checking for cleft palate is currently not routine after birth. Breastfeeding is highly promoted in Tajikistan as part of Unicef’s Baby Friendly programme.
However, during the training period, thanks to the British Embassy in Dushanbe, positive conversations were held with high level representatives in the Tajik Ministry of Health and an awareness of the need to differentiate feeding practices for babies with identified special needs (not just unrepaired cleft lip and palate) was acknowledged.
In November 2017, Emma Southby returned to Tajikistan to lead follow up sessions held in both Dushanbe and Kurgon Teppa to support participants putting August’s training into action. New information also came to light during the follow up sessions, specifically that bottle sterilization is not routinely recommended or carried out in Tajikistan and participants were not aware of the formula to calculate the amount of bottle feed a typical baby needs (150 mls per kilo over 24 hours).
After the November follow up sessions, Emma Southby and myself were invited to present at a regional Cleft Conference on Cranio Facial Abnormalities at Avicenna Tajik State Medical University in Dushanbe organized by Dr Martin Kamp.
To conclude, the first ever specialist training courses on feeding babies with unrepaired cleft lip and palate has been delivered in Tajikistan and barriers to safe and appropriate feeding have been identified. Further training of health professionals in basic paediatric feeding practices for all babies is also required in Tajikistan.
In the long term, this project aims to identify 2-3 individuals to train up as Cleft Nurse Specialists and empower parents and families with experience of cleft lip and palate to share their experience and knowledge of appropriate and safe feeding.
Helen Buxton 18th December 2017
Specialist Speech & Language Therapist (UK)