When children take toxic cough syrup, and live

But when she developed a fever in September 2022, the syrup she was prescribed turned out to be toxic. It ravaged her internal organs. Now the five-year-old spends her days lying in a room lined with Hello Kitty wallpaper, staring blankly up at a baby mobile, her mother Desi Permatasari told Reuters.

Sheena is one of hundreds of children from Gambia to Uzbekistan found by national authorities and the World Health Organization (WHO) to have been poisoned by contaminated medicinal syrups in the past two years, in one of the largest episodes of such contamination on record. The rash of poisonings led to criminal probes and lawsuits in at least four countries, a surge in regulatory scrutiny, and families with children dead or disabled.

More contaminated syrups were found in new regions this month, and the WHO has said they could continue to be found for several years.

Sheena lives in the worst affected country: More than 200 children in Indonesia died of Acute Kidney Injury caused by the poison. Indonesia also has the most survivors – 122 children, according to Health Minister Budi Gunadi Sadikin. The ministry says most have since been "cured" but six are still undergoing treatment.

Some of them, like Sheena, have crippling disabilities. Reuters' images of them at home offer a rare look at survivors and their parents in the aftermath of Indonesia's contamination tragedy.

"The doctor said her brain is damaged from the poison," said Sheena's mother. "She can only lay down."

The toxins were contained in syrups made by at least three Indonesian drugmakers, according to national regulators and the WHO.

One, Afi Farma, has been prosecuted along with two raw materials suppliers, CV Samudera Chemical and CV Anugerah Perdana Gemilang. In November, four Afi Farma officials, including Chief Executive Arief Prasetya Harahap, and two officials from each of the suppliers were convicted of violating pharmaceutical production laws. The Afi Farma executives were each sentenced to two years' jail; the other four got 10 years each.

The brightly colored Afi Farma syrups – such as the medicine taken by Sheena – contained ethylene glycol (EG), a commonly used chemical in products such as brake fluid and antifreeze. The EG concentration in the syrup base was as high as 99%, court documents showed. International standards say only a trace amount of EG, 0.1%, is safe in the legal base ingredient, propylene glycol.

On Nov. 2, 2022, the WHO warned that eight products made by four companies including Afi Farma contained dangerous levels of EG or a related toxin, diethylene glycol (DEG).

The Afi Farma executives deny intentionally supplying drugs containing deadly ingredients and have appealed, their lawyer Reza Wendra Prayogo told Reuters. Officials at the two suppliers, CV Samudera Chemical and CV Anugerah Perdana Gemilang, did not respond to requests for comment.

Indonesia's food and drug regulator, Badan POM, told Reuters in May it has tightened its import rules and increased inspections by 20%, but did not respond to subsequent requests for comment. President Joko Widodo's office did not respond to questions.

Indonesia's health ministry said in November this year it would provide 50 million rupiah ($3,200) compensation to families of children who died, and 60 million rupiah ($3,900) to the survivors' families.

Sheena's mother Desi said she is struggling to pay for hospital visits and has put her home up as collateral for a loan to fund medical bills for her five-year-old.

She and 31 other families are also suing the health and finance ministries, Badan POM, Afi Farma and two suppliers for more. They're seeking 3.4 billion rupiah ($219,000) for each child that died, and 2.2 billion rupiah ($142,000) for survivors.

Safitri Puspa Rani, a spokesperson for parents in that suit, said this week that parents had yet to receive any compensation. The social affairs ministry, which disburses such funds, did not respond to questions on that point.

Asked about the compensation offer, Indonesia's health ministry said in a Dec. 7 statement to Reuters: "According to our calculations, the compensation is fitting."

Governments in other countries where children fell victim to contaminated syrup have offered compensation to families whose children died. A court in India's Jammu and Kashmir region last year ordered the region to pay the families of 12 children 300,000 rupees ($3,600) each in compensation over a poisoning in 2020. In the Gambia poisonings, Gambia's government offered families 14,000 dalasis ($208) each; those families are also pursuing more, one of their representatives said.

"Given Sheena's condition, we have to think every day about how to buy Sheena milk and diapers," Desi told reporters at a news conference this week organized by lawyers who said they are representing the parents pro bono in the case.

In Indonesia, baby Rayvan Aji Pratama was given the Afi Farma paracetamol syrup in May 2022, at just nine months old. He now requires care 24 hours a day, seven days a week.

His father, Riang Triaji, quit his full-time job as a chauffeur to care for Rayvan. Riang and his wife, Resti Safitri, moved in with her mother to save costs. The family earns about 4.5 million rupiah ($290) per month, he said, and spends 3 million rupiah ($190) on medical costs.

Rayvan's mother recently took him to a birthday party for a 2-year-old in their neighborhood. The children played. He watched from his mother's arms.

Lawyer Siti Habiba is now representing the 32 families.

She said the parents decided to sue in December last year, after eight mediation sessions about responsibility for the poisonings with the government and companies at the central Jakarta court ended in deadlock.

"Companies think it's the government's negligence, while the government thinks vice versa," she said.