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Sunday, 20 September 2020

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Smile Train: The stigma surrounding cleft lip and palate

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Babies are born with a cleft lip and/or palate in every part of the world. This includes the UK and other western countries, but you rarely see children with clefts because treatment is offered for free on the NHS and it begins soon after the child has been born.

However, in other areas of the world, where more than 200,000 new babies are born with clefts each year, many children are not as fortunate. Families in many regions often do not have access to quality healthcare services or the resources to pay for proper cleft treatment. Ultimately, leaving children with clefts at much older ages.

Globally, there is a lack of education and awareness about clefts and other craniofacial conditions which often leads to negative stigmatization surrounding those born with these conditions.

Below, we’ve outlined some of the differing stigmas associated with cleft lip and palate from around the globe:

CHINA

Traditionally in China, there has been a cultural bias towards individuals with physical disabilities. This is because a large proportion of Chinese culture is deeply engrained in the teachings of Buddhism, which teaches that a handicap or deformity is an act of karma or fate.

As a result of this ethos, there has been an adverse outlook on disorders like cleft lip and palate, and children born with the condition have been forced to endure a lifetime of discrimination and social isolation. In extreme cases, children have been killed by their families due to the fear and arrogance surrounding the condition in China.

However, perceptions of the condition have drastically changed over the last decade. Government campaigns have focused on sending out educational pamphlets to households across the country, which has greatly improved the understanding and acceptance of craniofacial malformations.

PHILIPPINES

In the Philippines, when a person experiences an unexpected event in their life it is typically attributed to the grace of God. Filipino’s refer to this as ‘kaloob ng Diyos’.

God’s will, or kaloob ng Diyos, is a popular explanation of disease causation in the Philippines, and so naturally it is the perceived cause of cleft lip and cleft palate.

The Filipino’s belief in ‘God’s will’ is helpful in the acceptance of cleft lip and palate, with many families suggesting that their child was ‘God-given’ after being born with the genetic condition. Due to this belief, children born with clefts, and their families, are able to cope and accept their condition.

AFRICA

The perceptions of cleft lip and palate across Africa is somewhat divided. For example, there is a belief among the Yoruba families of Africa that clefts are caused by supernatural forces such as evil spirits or ancestral spirits. In these communities, being inflicted by evil sources is considered a family shame and it lowers their position in that society.

Meanwhile, the Hausa/Fulani society of northern Nigeria considers cleft lip and palate to be the act of a positive spiritual or divine intervention, rather than being inflicted by negative factors. In these communities, the child born with a cleft may be left untreated for fear of ‘interfering with God’s will’ or referred to traditional healers for help before going to hospital.

INDIA

In ancient times, cleft lip and palate was presumed to be a curse by God in India. Although many areas of the country are now better educated about the condition, some communities – such as the remote hilly areas of the Garhwal region – still believe that this is the case. Children born with clefts in these communities are called “Khandu” (incomplete) and are often shunned by society.

In other parts of the country, communities are more accepting of the condition. However, children are often brought into hospitals for surgery much later than the ideal surgical time. This is mostly due to poverty, illiteracy and improper health facilities.

For more information about how Smile Train is supporting children born with clefts globally, please visit: smiletrain.org.uk

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