Cleft lip and palate care in low resource countries

The author explains why the traditional ‘humanitarian mission’ style of charity work needs to change and how the charity CLEFT is making an impact.

It is estimated that between 150,000 and 250,000 babies are born each year worldwide with clefts of lip or palate or both. The great majority of these are in low income / low resource countries. Approximately 75% of these children are treated by or their treatment is funded by non governmental organisation (NGOs). If these NGOs were suddenly to disappear, a huge vacuum would be left in many countries.

There are several models by which NGOs provide cleft care. One model, popularised in the media, has been of large teams of ‘humanitarian missions’ visiting hospitals for seven to ten days, doing many operations and returning home, often with considerable publicity. Frequently, such visits are made following contact between surgeons and charities in the UK with local politicians or charities and are not organised with the local teams.

Such overseas missions can do good, but they can also do harm by de-incentivising local surgeons and other clinicians and by giving an image that doctors from Western countries are inherently better. The emphasis has been on surgery – not on the sort of lifetime multidisciplinary care that cleft lip and palate patients require. Some of these initiatives have undoubtedly provided long-term benefit in the countries involved but often the long-term effect is counterproductive.

The unused, poorly equipped operating theatre in Dhaka in February 2015.

One year later. Since then, a new anaesthetic machine and theatre light has been bought by CLEFT.

Another model is that of paying local surgeons and hospitals to carry out the operations – the more they do the more they are paid. Again, this model has helped many patients, but it has tended to encourage quantity over quality. It is undeniable that this model has allowed many patients, who would otherwise not have been operated on, to receive surgery – sometimes of high quality and sometimes not.

There are many challenges in providing cleft care for babies, children and adults in low resource countries. These include:

Lack of safe operating facilities and postoperative care.

Lack of well-trained surgeons
Obstacles for surgeons and other clinicians in keeping up to date
Sometimes – inter-disciplinary rivalry
The fact that many patients are poor
Long distances for patients to travel
Lack of associated specialists such as speech and language therapists in many countries.

Lack of recognition by surgeons of the importance of other specialists
Difficulties in follow-up – compounded by the costs and distances involved in travel.

Lack of outcome data
Emphasis on primary surgery without the recognition that cleft care involves all of childhood and early adult life
The number of unrepaired clefts but also the number of very poorly repaired clefts – sometimes resulting in what can best be described as ‘cleft cripples.’
A change of emphasis for the future
Although there will be some need for the existing models of NGO support, in the future the emphasis should be towards long-term planning and sustainability.

In the future, the UK can help by:

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