The Indonesian language has words for children who have lost their mothers or fathers, but none for parents who lose their children. Some say that is because the pain is inexplicable, something 42-year-old Safitri Puspa Rani can attest to.
Safitri’s eight-year-old son Panghegar died in October 2022, one month after his birthday. Panghegar had spent weeks in a paediatric intensive care unit, fighting acute kidney injury caused by syrup medicines that had been contaminated with toxic chemicals commonly found in industrial solvents and antifreeze.
More than 200 Indonesian children have died after taking the syrups. Some who survived have been left debilitated.
“These little children had all their organs injured, their bodies attached to all sorts of medical devices you can’t even begin to imagine,” Safitri said, recalling Panghegar’s last days, when she said her son had turned into someone she barely recognised.
Other families tell a similar story: their otherwise healthy children, sick with fever, went to see doctors who prescribed syrup medicines. Shortly after, they could not urinate, eat or drink. They would start bleeding severely and would need routine dialysis to stay alive.
Authorities confirmed contaminated syrups as the cause only in November last year. At least 116 medicines from six companies have been banned for containing high levels of toxic chemicals diethylene glycol and ethylene glycol.
Still grappling with grief, Safitri and 24 other parents are now joining a class action to sue Indonesia’s health ministry, food and drug agency and eight pharma companies, including some suppliers of the raw materials, over the death and suffering of their children. Parents want the government and the companies involved to take responsibility and improve manufacturing processes and disease management standards.
A health ministry spokesperson said it would follow the legal process, adding that all treatment expenses had been covered by public health insurance. The food and drug agency said it would respect the legal process.
A statement from Dingin Pakpahan, the legal team for PT Universal Pharmaceutical Industries, one of two producers sued by victims’ families, said it would follow the legal process. “We reported our supplier a day after the issue was found. The case is with the Indonesian police’s criminal investigation department,” a company statement said.
The Guardian has sought to contact the other companies for comment. They are CV Samudera Chemical, PT Afi Farma Pharmaceutical Industry, PT Universal Pharmaceutical Industries, PT Tirta Buana Kemindo, CV Mega Integra, PT Logicom Solution, CV Budiarta and PT Mega Setia Agung Kimia.
For Safitri, the fight marks her last duty as a parent to Panghegar.
“I know there’ll be nothing we can do that can bring Panghegar back to us, but this is my last responsibility as his parent, and I’ll do it no matter how long it takes,” she said.
“What I want is for the public to understand what we’ve gone through. How did this begin? What kind of system led to these children suffering from this injury?”
The parents also demand that the outbreak be classified as an “extraordinary event”, which means the government will cover all treatment expenses. Currently, treatment expenses are covered by Indonesia’s public health insurance, which the parents say is insufficient to cover co-morbidities that come with the injuries, and other costs.
“Some of the children who’ve been discharged from the hospital can’t move their limbs. Those who are in good condition need time to recover their communication skills and even to swallow food,” said one of the parents’ lawyers, Awan Puryadi, adding that the demands also include compensation for the families.
To be with their children at the hospital, some of parents don’t have any choice but to stop working. Some must spend extra money on rent and commute, he said.
But financial issues are only one of many facing these families. Their other children are forced to tag along to the hospital and miss school or attend classes virtually under the care of their grandparents, like Safitri’s oldest son.
The mental toll is especially difficult for Safitri. She wants Panghegar to be remembered as generous and lively, a thoughtful son and a playful brother, a top student and a reliable friend, rather than associated with such an appalling tragedy. But she is driven to see the case through to the end.
“Who, in the face of such tragedy, wants to appear in public and be covered by media? I’m fighting my own anxiety. This is painful for me. No parent would want to be in this position,” Safitri said.
‘My son is my hero’
The families, who used to spend weeks in the hospital’s waiting room together, are now reunited in the courtroom. At the first hearing in January, Safitri wore a T-shirt printed with long-haired Panghegar’s smiling face and the words, “My son is my hero.”
At the second hearing in February, all 25 parents and relatives were present in the courtroom, each wearing a black T-shirt bearing the words, “Supposedly medicine. Apparently poison.” The case is expected to run for six to eight months, and much longer if there is an appeal, the families’ lawyer said.
Safitri said: “I’m not even thinking about whether we will win or not. I need people to know how the government has responded to us, its own citizens, so that they can mitigate their risks while living in a country like this.”