what we do to find children and help
Location of our work
Sumatra is the sixth largest island in the world, and the third largest in the Indonesian archipelago. Lying between the Indian Ocean and the peninsula of Malaysia and Singapore, Sumatra sits parallel to the fault line, which runs up the west coast. This is where two tectonic plates meet, and it was movement caused by the immense build up of pressure along this fault line that resulted in the Tsunami in December 2004. Worst hit was the northern tip of Sumatra, particularly Aceh province. As one can imagine, this disaster was huge in the life of our charity. We continued to support children and other organisations and work through such a difficult time and now over ten years on, we have covered almost every tip of this huge island and helped around 1000 children.
Each year, our team undertakes several road trips to revisit our patients and find the next generation of children in need. Our search takes us to new destinations each year, where many transport issues await us; landslides, roads undergoing basic repair, impassable mountain ranges, flooding and unmapped terrain to mention just a few. Our road trips rely on the many skills of our volunteer team members, including their ability to speak a multitude of the languages that are found across Sumatra, to reassure the families of children that may have never left their small rural villages, and the stamina to withstand sometimes 15 hour days driving across extremely damaged roads.
Cleft and Special educational need
The education system in Indonesia is a far cry from that which we experience in the West. Imagine a lack of sufficient funding, teacher motivation and almost no facilities to deal with special needs and that is where Indonesia’s cleft suffering children are educated. Many children suffering with cleft experience severe problems with speech due to their empty palate. It can be very difficult to understand someone with a cleft palate deformity both before and sometimes after surgery. As a developing country, Indonesian schools are so ill equipped to support any special educational needs that many cleft children are left behind as teachers and other pupils do not have the time or patience to try and understand these children. With such an inclusive model of education in the UK it can be hard to imagine the educational experiences that Indonesian cleft children endure; often these children are severely bullied due to the way they look and speak and lack the support they so deserve. This, in many cases can leave children emotionally and intellectually starved and damaged. Fortunately, with surgery at a young age and speech therapy, many children are very happy to engage in school life and will do well in their educational futures. Whilst we aim to do all that we can to ensure this happens for all the children we find, we cannot change the system itself and hope that with time Indonesian education system becomes more fully inclusive for teaching special educational needs, a journey which has taken the UK the past 100 years of legislation and reform to get right.
Whilst this area of Indonesia is so rich, diverse and colourful in its culture; from languages to beliefs, religions and superstitions, some of these aspect can cause immense difficulty in what our charity aims to do. For example, it is very common place for whole families to be born, live and die without ever really leaving the small rural villages they were born in. It is very understandable, therefore, that their understanding of western medicine is often non-existent and they rely on superstition, cultural mythology and faith to make sense of their world. This is particularly true as faith is so highly regarded in Indonesia and for good reason; it is mostly still faith missionaries who provide medical help and education in many of the most remote jungle areas of the island. In fact, our charity itself often relies on the support of Christian nuns to help us find children across Sumatra. With such reliance on faith and belief, people have come to understand the reasons for cleft deformity in their own way and this differs hugely from what is scientifically known by Western medicine. For example, some families believe that a cleft child is a gift from God and they will bring the family fortune; therefore repairing the deformity is to go against God. Others believe that if a father goes fishing to feed his family whilst the mother is expecting, that they baby will be born cleft, as though the deformity is symbolic of the hook in a fish’s mouth. Sadly, in this case families go hungry and malnutrition can become the very reason behind why such a child could be born with a deformity.
Unfortunately, in Indonesia there are little opportunities for cleft sufferers, as trouble communicating, poor education and discrimination follows these children throughout their lives, therefore ‘good fortune’ seems far from their reality, despite peoples belief. In so many cases we find ourselves convincing families to allow their children to undergo surgery to change the life of their child for the better. This takes much patience and understanding but ultimately our aim is to do all that we can to educate and keep opening the door for children to receive their chance of surgery.