Poverty and poor education have contributed to deaths from malnutrition while disabilities often go untreated

'She didn’t have the energy to cry': Timor-Leste and its struggle against malnutrition

“When she cried, her voice was like a bat, very small,” says health worker Alarico Bere. “She didn’t have the energy to cry.”

At 13 months old, Maria Sequira was identified as severely malnourished by Bere, a visiting volunteer health worker in the Timor-Leste district of Covalima. He sent Maria and her family to a visiting government outreach clinic at the top of the hill.

Nurses used a colour-coded tag to measure Maria’s middle upper arm circumference (Muac) and see if it was thick enough for her age. Green is good, yellow is concerning.

Maria’s was red.

Her parents, Veronica Sequira and Quintino Tilman, were referred to a health post in Zumalai but they could not afford the transport to get there.

Facebook Twitter Pinterest In Covalima, nurses use a colour-coded tag to measure children’s middle upper arm circumference and see if it is thick enough for their age. Photograph: Helen Davidson/The Guardian

“But then World Vision staff told us we had to refer her now, we had to find it,” Tilman says. “We realised this was serious.”

Maria recovered and now she, her family and Bere are sitting with Guardian Australia outside their small house in a village in the Covalima mountains, bordering Indonesian West Timor. Maria is quiet and clings to her mother, who speaks quietly.

Smoke curls through the trees, and chickens, dogs and pigs roam freely and scratch in the damp earth. From a concrete open hall on the hill crest, the screams of children receiving vaccinations can be heard. The outreach clinic is visiting again.

Sequira, who says she used to eat very little herself, gave birth to Maria at home and did not know how much she weighed but believed she was big.

In villages where every child is underweight, a child like Maria might not seem so bad but the colour-coded tape gives an unequivocal diagnosis of malnutrition.

Bere, a volunteer health worker affiliated with the government, has been trained and assisted by World Vision’s aid program, partly funded by the Australian government, which also provides medical resources to clinics.

His job starts with “mapping” communities, identifying vulnerable families and malnourished children and referring them to medical care.

As we talk, Maria’s siblings wander in and out, carrying plates of food that aid workers, including the visiting World Vision Australian chief executive, Claire Rogers, happily note contain a number of the superfoods pushed by their nutrition programs.

Facebook Twitter Pinterest The World Vision Better Food Better Health program helps community groups set up agricultural plots to grow ‘superfoods’. Photograph: Helen Davidson/The Guardian

Maria recovered quickly but it is possible she’s still been affected by the severe malnourishment at such a young age.

In this country, which emerged from violent occupation less than two decades ago, and which is a little over an hour’s flight from Australia, other children are dying of malnutrition.

It is not exclusively due to a lack of food but rather a combination of factors: poverty, lack of nutritional education, poor health literacy and sanitation, as well as strong beliefs in spiritual medicine. Disabilities go undetected and untreated.

The signs of international aid groups and programs are scattered across the countryside, filling in where the Timor-Leste government cannot.

Parents don’t have enough knowledge about nutrition, feeding them just plain porridge with MSG. Dr Genunia Alfonso Da Silva

Malnutrition in Timor-Leste has led to one of the highest rates of stunting in the world. It is getting better, slowly, but according to a government health survey in 2016, about half of all children under five show stunting, more frequently and more severely among the poorest families.

About eight in 10 Timorese people depend on subsistence food production and much of the land is arable, but an extraordinary number of people do not know what to grow or eat.

Covalima is one of four districts targeted by the Better Food Better Health program, run by World Vision and funded partly by the Australian government and which focuses on increasing nutrition and sustainable nutrition-based agriculture, assisting 31,000 people so far.

Unicef has also focused on health workers, nutrition and parent education, and until recently the World Bank ran a similar program in Bacau and Vivique. It saw the proportion of mothers eating iron-rich foods more than double from 15% to 37% over five years.

They all push hard on “superfoods” – eggs, soybeans, green leafy moringa, red kidney beans, orange sweet potato – to replace the rice and porridge-heavy diets of the rural areas. In many areas, moringa is considered animal feed or used in death rituals, and not known to be edible.

Facebook Twitter Pinterest Timor-Leste health workers, assisted by World Vision Australia, run parents’ groups in regional communities to help families address the high rates of malnutrition. Photograph: Helen Davidson/The Guardian

“I think the most exciting thing for me was seeing one of the older sisters come out with the food that we’d just been talking about on a plate,” Rogers tells Guardian Australia after visiting Maria. “Seeing that kind of behavioural change, and so quickly in the two to three months we’ve been working with them, is pretty profound.

“They’ve been moving away from deeply entrenched attitudes about what foods are appropriate.”

Across the districts, local people are increasingly growing their own more nutritious food, processing soybeans into tofu and tempeh, and running parent support groups, farming collectives, cooking classes and local savings and loans groups.

Economic development specialists are being recruited, to help people connect to markets when they start to have excess product.

More than 120 of the government health workers have received training and “incentive packages” of a chicken coop and chickens from World Vision, which are also given to vulnerable families.

Facebook Twitter Pinterest In Alieu, community members produce their own tofu and tempeh under a program funded by World Vision and the Australian government to address malnutrition. Photograph: Helen Davidson/The Guardian

Navalia, 12, is a bright and happy girl, and she grins and giggles when asked about her toys and complimented on her dress.

Her disability suggests cerebral palsy but her parents don’t know because she has never been diagnosed. They once went to a government department to ask for disability support but were told she could only access it once she was an adult.

“No one cared about us, so we just left it,” says Ilario Magno, Navalia’s father and a teacher who would desperately like his daughter to go to school.

There is a disability trained teacher at the nearby school but the barrier is safe transport.

In another village, Eduardo Barreto, 11, does go to school, where he enjoys mathematics and dreams of becoming a parliamentarian. But it takes him an hour to walk the couple of kilometres and is extremely painful, as he hobbles without shoes and with one deformed foot.

“We discouraged him from school but he wanted to go,” says his mother Teresa Vincen.

Like Navalia, their attempts to get government assistance were rebuffed.

In a meeting with local staff, Rogers recalls Eduardo’s story and reminds them that children are at the heart of their work, and if there’s some extra way to help – transport assistance for example – they should do it.

At a parents club in Alieu, the instructions are basic; boil water before consuming it, wash hands before eating, breastfeed babies and feed children healthy food.

In 2016, just 45% of rural Timorese used safe sanitation services. Only about half of babies under six months are exclusively breastfed, and just 13% of children age six months to 23 months are receiving “the minimal acceptable diet”, according to the government study.

Facebook Twitter Pinterest Navalia Nora Guterres Magno, 12, was born with a severe disability but her family receives no assistance from the Timor-Leste government. Photograph: Helen Davidson/The Guardian

The top three causes of malnutrition in the Covalima region are disease, food insecurity and poor nutritional knowledge, says Rui Amaral, a nurse and director of the Zumalai community health centre, which cares for around 16,000 people across eight villages.

He has noticed more referrals of children with malnutrition, which he attributes to greater health awareness, but the cases are often serious and sometimes fatal.

Dr Genunia Alfonso Da Silva treats between one and three children for malnutrition each week, usually between 10 months and three years of age.

“Sometimes the parents don’t have enough knowledge about nutrition, feeding them just plain porridge with MSG, or not exclusively breastfeeding [babies under six months],” she says.

They often present with respiratory problems and sometimes the family has avoided medical care or spent their money on animals to sacrifice in traditional ceremonies instead of nutritious food.

“They believe their child is sick or malnourished because of a curse on the family or some spirit is angry, so they’ll try to fix it with traditional medicine,” Da Silva says.

Facebook Twitter Pinterest It takes Eduardo Barreto, 11, an hour to walk the couple of kilometres to school, which is extremely painful as he hobbles without shoes and with one deformed foot. Photograph: Helen Davidson/The Guardian

“Shortness of breath is considered in villages to be a traditional disease healed by, for example, lime or lemon on the chest, or betel nut leaves with lime and spit on the chest.

“From a medical perspective, it’s pneumonia.”

Da Silva says attitudes are shifting, as people realise the clinic has healed sick children after traditional medicine did not work.

Timor-Leste has made strides since independence, and is routinely praised for its commitment to human rights and democracy, but its people remain largely poor and struggling.

Serious economic troubles take much of the government’s focus and international aid is an obvious and heavy presence.

In 2013, donors pledged to increase nutrition investment but Australia’s aid was focused on places with higher numbers of undernourished children, rather than higher rates. A 2015 Department of Foreign Affairs and Trade report revealed just 1.5% of Australia’s investment in nutrition was spent in Timor-Leste.

There are multiple compounding factors of poverty to deal with, not least a lack of government assistance.

Amelia Da Cruz, who has lost two of the four children she has given birth to since she was 15, says access to healthcare remains a concern – many people can’t get to hospital and the outreach clinic does not come to her village.

But Da Cruz says the all-female farmers group she leads has been transformative for the community.

“I’ve seen many changes after we were taught about nutritious food,” she says. “I feel it’s not a lot of work because we are united.”

The Guardian traveled to Timor-Leste with World Vision