The Children of Sumatra aims to help children suffering from cleft lip and palate living on the island of Sumatra, Indonesia, where most families are too poor to pay for a simple operation that can transform their child’s future.
In Europe and America people are almost unaware of this condition as it is corrected within the first year of a child’s life, but in Indonesia this is not the case and the condition affects one in 300 children. Here are some of the children that The Children of Sumatra has been able to help.
(Left) Winda is five and lives near Sibayak, a volcano in north Sumatra that erupted in September 2010. Winda and her family were moved to a camp for safety. There a friend of our charity, who was helping to distribute food to the refugees, noticed Winda was suffering from both cleft lip and palate defects so she contacted me and asked if we could help her. We arranged for Winda to meet the cleft team, and she was given an operation date within a few days. She is lucky as she is young enough to be able to learn to speak clearly now her palate is repaired. Our team recently went to visit Winda, and she is doing well and excited about starting school next year. The volcano has calmed down now so they are living at home again.
Text and photos by Katie Pavett / Children of Sumatra
(Left) Alex was brought to our attention in 2009. He was already 13 years old and had never had surgery; his palate was open and his voice very unclear. He underwent surgery, but a few months later his father passed away. With five children to feed Alex, being the eldest boy, was put to work to help feed the family. Since then The Children of Sumatra has found sponsorship for Alex’s family, which allows Alex to return to school. Alex has moved to Harapan Jaya, a rehabilitation centre where he gets speech therapy every day. His voice is becoming much clearer, and he has been placed into a private school. Alex is one of the happiest boys we have ever met; it is a real gift to be able to help such a clever boy get the education he deserves.
(Left) Aprilla was six months old when we found her in 2008. She was suffering from a very rare cleft deformity in the lower lip. Not only was her bottom lip spilt open, her tongue was also stuck to the bottom part of her mouth. When Aprilla was born, she was disowned by her grandparents and her parents were made to leave the grandparents’ house. In many cases like this, the extended family is embarrassed by the way the children look. Aprilla’s parents managed to make a makeshift shack in the paddy fields and this is where they lived for the first six months of Aprilla’s life.
Luckily not long after we met them, a team of highly qualified surgeons came and were able to operate on both Aprilla’s lip and tongue, with no complications. Aprilla healed very quickly, as most very young children do, and with remarkable results.
(Left) Bobby was one of the first children we helped in 2002 and, to this day, is still one of the most severe cases we have seen. Bobby was six years old when we found him on an island off north Sumatra. His disability jumped out at us immediately. In 2002 Bobby underwent surgery for his lip, gums and back part of his palate; the results were astounding. As Bobby lives very close to some of the members of the charity, close contact has always remained. The Children of Sumatra found a sponsorship and to this day we still help them. In 2007 Bobby had surgery once again to close the remaining part of his palate and to operate on his nose. Bobby is an extremely charming and handsome young man now – every year he tops his class, and hopefully he will have the chance to attend university one day.
(Left) Dedek is a case extremely close to our hearts. We are friends with Dedek’s family, as they had lost everything in the 2004 Asian tsunami and we had helped to rebuild their lives. Dedek was born a few months after the tsunami. It was a major shock for us all when Dedek was born with such a severe deformity. Dedek had one older brother, and when Dedek was just one month old her brother became very ill. Eventually he was diagnosed with leukemia and died when Dedek was only seven months old.
(Left) Six weeks after her brother’s death, Dedek was scheduled for surgery. It was a very hard time for Dedek’s family. Dedek’s first operation was for her lip only and a year later she had surgery again on her palate. When Dedek is around seven or eight years old, she will have further surgery on her palate and her nose reconstructed.
(Left) Two days before Christmas 2004, our team had arranged to go back to Banda Aceh from Sumatra for a much-needed break. Then Dewita turned up, a young girl of 12, with the saddest eyes you had ever seen. Our team took one look at Dewita and all our hearts went out to her and all our plans were changed. Dewita was operated on Christmas Day 2004. The next morning everyone was woken by a large earthquake, though after a few minutes everything settled down again and no one had any idea how large the disaster actually was. When we eventually went home, many friends and family had been lost to the tsunami. Dewita is now 16. She has also undergone dentistry and is now a beautiful young lady. She saved the lives of our team by turning up at the last minute, and we are forever grateful to her.
(Left) Fernandis is 12 years old. He was abandoned by his family and forced to fend for himself by begging on the streets. We received a phone call one day from a friend who had seen Fernandis on the streets and was very concerned. Luckily we had a contact in that area at the time and I asked if they could go and talk to him. He told his story and said he would love to have an operation. We took him to a rehabilitation centre we work with closely and asked their advice, as he was only 12 years old. They agreed that he should be operated on and they said they would take care of him. Fernandis had his operation and he never returned to the streets. He has been adopted by friends of the charity and has been at school.
(Left) Samiaji was very sick when we found him. As well as having a cleft of both lip and palate, he had a deformity with both his feet and hands, one of the most severe cases we have ever taken on. After many tests by doctors he was diagnosed with TB and severe malnutrition, there was no way he would be strong enough to undergo surgery. Samiaji needed months of medication and a good diet before he could be operated on.
His eyes were also causing him problems as they are so light-sensitive he finds it hard to see. This was also due to malnutrition. Five months after being checked by doctors Samiaji was strong enough to have surgery, with amazing results. Due to his severe malnutrition, Samiaji had also lost most of his teeth, and lots of dental work has been carried out and he will be fitted with false teeth.
(Left) The parents of Syafiatuddin did not tell anyone that they had a cleft child as they were embarrassed. When one of our team members eventually found out about him, he feared for Syafiatuddin’s life as he was dangerously malnourished. We went to the village immediately and rushed Syafiatuddin into hospital. He was 3.5 kg when he was born and now three months later he weighed 2 kg. Immediate action was taken and he was fed via a tube.
Syafiatuddin was a fighter – within two days he was looking so much stronger; after eight days in hospital he was discharged. A few months later and with help from us to buy milk, Syafiatuddin was fighting fit and ready for surgery. In 2007 at nine months old, Syafiatuddin had his lip operated on. We often visit him and he is doing well. This young boy is very lucky to be alive.
(Left) Veronika was found when she was nearly three years old but she looked like a child of six months. She was spotted eating from a dustbin with her mother. Veronika was taken to the rehabilitation centre to be washed clothed and fed. Veronika’s mother had a mental age of a child, and we later found out that she had given birth to five children and four had died, leaving just Veronika, who also had severe malnutrition and was unable to walk. We then found out she was suffering from TB. When Veronika was strong enough her lip was operated on, but her mother disappeared after, never to be seen again. After months of rehabilitation and leg braces Veronika can now walk by herself. She is now nearly five and is still unable to talk. She is now in the care of Harapan Jaya, a rehabilitation centre.
(Left) Andre is such a happy young child but is suffering from many more problems than just a cleft lip. When we first met Andre and assessed him for surgery, I didn’t realise he had other problems and his parents did not mention anything to me. We realised when he was waiting in the hospital for surgery and he was shuffling on his bottom.
(Left) Andre was two and a half years old and I thought it was strange we had never seen him walk; then I realised he had club feet. His cleft operation went ahead and in October 2010 he will have both feet operated on via our charity in February 2011 by a team of Dutch surgeons. Andre’s parents are both very young and this is their first child, they have found it very difficult to cope with Andre’s problems, but they are very loving parents.
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