Devouring books from a young age, Sheena Almaera Maryam had been excited about her first day of kindergarten near Jakarta.

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 news agency also interviewed three of the families.

"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 coloured 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).

Desi Permatasari, 32, comforts her daughter, Sheena Almaera Maryam, 5, who was prescribed contaminated cough syrup last year, in their home in Bogor, West Java province, Indonesia, Oct 6, 2023. |REUTERS

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.

'COMPENSATION IS FITTING'

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 organised 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 neighbourhood. The children played. He watched from his mother's arms.

A feeding syringe fixed to the bedroom wall above Sheena Almaera Maryam, 5, who was prescribed contaminated cough syrup last year, at her home in Bogor, West Java province, Indonesia, Oct 6, 2023.|REUTERS

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.

'LOWER EXPENSES'

In Gambia and elsewhere, poisonings were linked to products made in India, which has moved to shutter and tighten up regulation of some pharma suppliers but hasn't found who was to blame. In Indonesia, the syrup was domestically produced. Some of it was prescribed through the national health insurance service, BPJS.

The chain of events that led to the poisonings was made clear in an Indonesian courtroom in November this year. The court in Kediri, where Afi Farma is based, found it started in 2021. That year Samudera, a small soap ingredient supplier struggling during the COVID pandemic, had placed false DOW Thailand labels onto drums containing EG that it sold to distributor Anugerah Perdana Gemilang for several months until May 2022. DOW did not respond to a request for comment.

The labels stated the drums held pharmaceutical grade propylene glycol, police said. Afi Farma used that to make the syrups, as Reuters has reported.

Samudera's Chief Executive Endis, who goes by one name, told the court he did not know the product was going to be used in drugs; the company simply repackaged it "to lower expenses," according to the case documents. Distributor Anugerah Perdana Gemilang issued certificates of ingredient analysis for several batches of the fake propylene glycol to allow its pharmaceutical use – without testing it, the documents said, citing testimony from Anugerah official Aris Sanjaya.

Anugerah then supplied the material to Afi Farma's drug ingredient supplier, Tirta Buana Kemindo. It found its way into 70 batches of Afi Farma cough syrup, the case documents showed. Tirta Buana Kemindo did not respond to requests for comment.

The syrups were distributed to some of the nation's poorest families through the health service. The health ministry said it does not collect data on how many children were prescribed the medication through that service.

The health service said its role was simply to administer payments rather than check drug quality. It said it does not retain data on the use of medicines and only makes payments based on requests from hospitals and medical services.

Indonesian law has since 2009 obliged pharma firms to ensure their products are safe. Maximum allowed levels for EG in pharmaceutical ingredients were only added to its pharmaceutical standards in 2020. Afi Farma registered its product in 2021 without EG test results and the court said in November in the Afi Farma case that Badan POM, the food and drug regulator, had approved the products "thoughtlessly."

Penny K Lukito, Badan POM chief at the time, told parliament in November 2022 there were no safety limits for EG or DEG "in finished products," saying there would be too many products for the agency to test them all individually.

After the outbreak of poisonings, in March this year, the health ministry updated the standards, for the first time explicitly requiring drugmakers to test for EG and DEG.

At least 60 children in Jakarta and the neighbouring province of West Java, whose parents joined a WhatsApp group for support, had Afi Farma syrup prescribed through the health service, two of the parents in the group told Reuters.

As of Nov 27, 2022, health ministry data shows 124 children in those regions had been diagnosed with Acute Kidney Injury.

Reuters could not determine how any toxins found their way into products made by the other firms under investigation. Two responded to inquiries. One, Universal Pharmaceutical Industries said its production remains suspended "and if the situation persists … maybe the company will shut down," adding it never produced drugs with excessive EG or DEG. The other, Konimex, said the incident was long past and noted its products are now listed by the regulator as safe for consumption.

'EVERY DAY A NEW KID'

Sheena was admitted to a local hospital in early September 2022 with a 40C (104F) fever. Doctors prescribed the Afi Farma syrup. Two days later, she was still feverish and struggling to breathe or pass urine.

Doctors advised her mother to take her to Jakarta's biggest government hospital, Rumah Sakit Cipto Mangunkusumo (RSCM), a referral facility with dialysis machines for children. She was admitted on Sept 9. Doctors found "high levels of poison" in her blood but couldn't say why, Desi recalled.

"In the beginning, none of us knew what it was," said the Jakarta hospital's director at the time, Sumariyono, who goes by one name.

In February that year there had been two Acute Kidney Injury cases – nothing extraordinary, he said. By September, there were 20.

The doctors alerted the health ministry, consulted experts abroad, and pored through medical journals looking for clues, said RSCM paediatric kidney specialist, Dr Eka Laksmi Hidayati.

Across the capital, dozens of parents were in the same situation.

"Every day there was a new kid, and every day there was a kid that died," said Desi.

On Oct 2, three-year-old Alvaro Fidelis Sulu was rushed into the paediatric intensive care unit four days after taking Afi Farma syrup. His fever persisted, his vision was blurry, his limbs were swollen and he was unable to eat or pass urine, said his mother Septiana Juwita Sari.

With doctors unable to find a cause, the parents speculated for themselves: contaminated sewers, poisoned food, some COVID complication?

Safitri, the mother who has since become an unofficial spokesperson for the parents, arrived at the hospital on Oct 5 with her 8-year-old son, Panghegar Bhumi. He had been feverish and vomiting for days, then his feet, cheeks and stomach started to bloat and he struggled to pass urine.

That day, the WHO warned about substandard cough syrups made in India, linking to them the deaths of 66 children in Gambia. The Indonesian parents made the connection.

"Why would we all have the same drug? That's when we had the suspicion," said Alvaro's mother Septiana.

Panghegar had joked the syrup his mother was dosing him with was "radioactive" because of its fluorescent green colour, his mother Safitri said.

Within days, he was dead.

'PANICKING'

Doctors at the Jakarta hospital were "panicking," Dr Eka said.

They held a Zoom call on Oct 7 with the paediatrician who handled the Gambia outbreak, Dr Vivian Muoneke. She suggested the link.

They decided to check for EG contamination.

That process did not go smoothly. In emergency meetings with the health ministry, provincial health agencies and medical specialists in early October, the hospital doctors called for tests.

Some doctors were resisting the suggestion that cough syrups were to blame, three people who attended the meeting told Reuters. Some thought the childrens' affliction might be linked to COVID, one said; others thought it would be premature to recall and test syrups, said another. The doctors who had spoken to Muoneke were pushing for the link to be checked, said the third.

Badan POM issued a statement on Oct 12 saying the medicines in Gambia were not on sale in Indonesia. A Badan POM official told the Afi Farma court hearing in Kediri that it had only begun to test drugs for EG that October, without giving details.

On Oct 13 the health ministry separately sent samples of patients' blood and urine to the national police's forensic services for testing, as they were used to running toxicology tests, it said. Police did not respond to a request for comment.

Court documents show the results came out on Oct 17, detecting EG in the blood samples of patients. This prompted further testing by regional health agency labs and Badan POM.

The health ministry recalled the syrups on Oct 18. But by then, it had recorded 206 cases of Acute Kidney Injury across the archipelago, 99 of whom had died. By the end of the year, it said, 204 had died. The consumer protection agency, Badan Perlindungan Konsumen Negara (BPKN), said more than 70% of them were younger than five.

'LIKE A BABY'

There is an antidote for EG poisoning, a drug called fomepizole. But it costs thousands of dollars per course and is rarely available in poor countries, two experts said.

Doctors and officials were sent to Singapore to collect it. On Oct 24, an unidentified diplomat hand-carried 16 vials from Australia, according to the Australian regulator, which said up to two vials could be needed per child. At a health ministers' meeting in Bali days later, Minister Budi secured more doses from Japan.

Through the end of October 2022, 146 vials were distributed in 17 hospitals across Indonesia, the health ministry told parliament. The antidote is best given as soon as possible after any poisoning, before the body has broken the ethylene and diethylene glycol down into toxic byproducts that damage the organs, the experts said.

As such, it was of little use for scores of children who were already sick.

The Jakarta doctors gave it to new patients as they were diagnosed, and Health Minister Budi said in a statement in November 2022 the number of Acute Kidney Injury cases fell once the antidote had been administered.

Safitri said if mothers like her had known of the existence of an antidote, they would have "sold their houses for just one vial."

The long-term effects of EG and DEG exposure for children are not known, said Kalle Hoppu, a Finnish poisons and paediatric medicines expert who investigated the Gambia incident. He said studies are rare, partly because incidents have largely happened in low-income countries with weak healthcare systems where few survive after ingesting the toxins.

Some of the Indonesian children face an uncertain future: When Reuters visited in October, Sheena no longer needed dialysis, but depended on a tracheostomy tube taped to her neck to help her breathe and a nasogastric tube through her nose to feed.

After six months in hospital, Alvaro, now 5, was at home, but unable to walk. Once fond of speeding through the alleyways of his neighbourhood on a bicycle, he must be wheeled around in a stroller wearing diapers, "like a baby again," said his mother.