Medan, Indonesia – When Siti’s son, Mohammad Fajar, first fell ill at the end of August this year, the housewife and cleaner did not think much of it.
The five-year-old had just celebrated Indonesia’s Independence Day with his family at home in the city of Medan, playing with his mother’s mobile phone to make videos of himself dancing and laughing.
As far as Siti, who like many Indonesians goes by one name, was aware, her only child was healthy enough to fight off a cold.
She gave him cough syrup bought from the local pharmacy to ease his symptoms. But on September 15, Fajar died.
It was not the cold that killed him but suspected kidney failure caused by the widely available medicines that were supposed to help him get better.
“It’s so lonely without him,” Siti told Al Jazeera, asking that a photo of him in hospital be published for others to see how ill he had become. “We were too late to save him.”
Fajar is one of the dozens of Indonesian children who have died since August as a result of taking cough syrups suspected of being contaminated with chemicals used in anti-freeze products. The deaths have prompted the government to order the withdrawal of syrup-based medicines from sale, and revoke permits for more than 1,000 such products.
Malahayati, the chairman of Indonesia’s Child Protection Agency in Langkat in North Sumatra, told Al Jazeera that the agency was “very concerned” about the recent spate of deaths.
“We ask the government to immediately find out how this originated and provide a solution so that there are no further victims,” she said.
Indonesia recorded more than 269 cases of acute kidney failure as of October 26, said Mohammad Syahril, a spokesman for Indonesia’s Health Ministry. Some 157 of those affected had died, he added.
Experts suspect that both numbers are an undercount, noting that some of the first cases may not have been recorded as kidney failure because the children were suffering from other illnesses and the fact that many were unaware of the potentially contaminated medicines.
Suspected anti-freeze contamination
After an investigation, the ministry said it had found that some medicinal syrups – used to bring down fevers, and ease the symptoms of coughs and colds – had been contaminated with chemicals including ethylene glycol, diethylene glycol and ethylene glycol butyl ether.
The World Health Organization (WHO) says such substances, which are usually found in antifreeze products and used in refrigerators, air-conditioners and freezers, are not safe for use in medicines.
Last month, it ordered cough syrup products manufactured by a company in India to be removed from sale after the death of 66 young children in The Gambia from acute kidney failure.
According to the Indonesia Food and Drug Supervisory Agency (BPOM), the chemicals had been found in locally-produced products, including fever medicines Termorex Syrup, Unibebi Fever Syrup and Unibebi Fever Drops, as well as cough medicines Unibebi Cough Syrup and Flurin DMP Syrup.
To treat the sudden rise in acute kidney failure cases, Indonesia had to ask neighbouring countries, including Australia and Singapore, for the antidote – a medicine known as fomepizole – but the potential treatment arrived too late for Fajar whose illness, like many other children affected across the country, at first appeared innocuous.
“I thought it was just a normal fever but it wouldn’t go down, so I went to the local pharmacy and bought some liquid paracetamol for him,” Siti told Al Jazeera.
But every time Fajar’s temperature dropped, it would surge back up again within a few hours, so Siti decided to take him to hospital. There she was told Fajar probably had dengue fever – a disease caused by mosquito bites – and he was put on a drip. Unfortunately, Siti, who like many Indonesians does not have medical insurance, could not afford to keep her son in hospital for further tests and observation.
“After he had one bag of medicine through the drip, I decided to take him home and try and raise some more money for his treatment,” she said.
While she was trying to secure the funds from friends and neighbours, Siti continued to treat Fajar’s fever with locally bought syrups – buying two different brands in addition to a fever syrup prescribed by the hospital.
As the days passed, Fajar appeared briefly as if he might be getting better, regaining his appetite and a little of his energy, only to deteriorate again several days later.
This time, Siti called Fajar’s father who works in neighbouring Aceh province as a labourer and asked him to come home. By the time he arrived, Fajar could no longer move and was lying in bed staring at the ceiling and struggling to breathe.
By the time the family was able to take him back to hospital, the doctors told them that Fajar would need to be admitted to intensive care.
“It’s very bad. He is critical, so it would be best to pray,” Siti recalled one of the doctors saying.
Siti could not cope with seeing Fajar, now attached to a ventilator, in the hospital bed, so her cousin, Sri Wulandari kept vigil by his bedside instead. “His breathing became ragged and a doctor came in and said ‘Wait, we’re trying our best’ but five minutes later he was dead,” the 30-year-old told Al Jazeera.
“I didn’t know how to tell his mother. But I was crying and as soon as she saw my face she knew.”
Wulandari and Siti told Al Jazeera that the doctors who treated Fajar at Adam Malik Hospital said the boy had died of kidney failure and that, if he had not been so weak, they would have put him on dialysis.
At the time, the family had not heard of young children dying from acute kidney failure, and did not know about the potentially poisonous syrups. Siti said officials from the local health department came to her home two weeks ago and took the fever medication that she had given to Fajar.
When contacted by Al Jazeera, the health department confirmed that it had seized medication from the homes of suspected kidney failure patients for testing, but said it could not release any of the results of the tests. A spokesperson for the health department confirmed to Al Jazeera that to date 11 patients – all children – had died of acute kidney failure in North Sumatra province, which includes Medan.
The health department and Adam Malik Hospital where the patients were treated, declined to answer questions on the state of any ongoing investigation into the seized syrups or how they might have become contaminated.
According to BPOM, two pharmaceutical companies are currently under investigation after it was suspected that they had switched to sourcing ingredients from pharmaceutical suppliers to chemical suppliers, perhaps leading to contamination.
“There are indications in their products that [chemical levels] were excessive, highly toxic and suspected of causing kidney injury,” Penny Lukito, the head of BPOM, said at a news conference in Jakarta in October.
Meanwhile, back in Medan, Siti says no one has contacted her to clarify if they found anything suspicious in the medicine that Fajar took, and that she keeps fainting from the stress of the situation and when she remembers her son.
Just a few months before his death, Fajar had started kindergarten and still slept in bed with his mother. For Siti, the sense of loss has been almost unbearable.
“It’s like she died too,” said Wulandari.