Indonesian mothers go to court over tainted cough syrup scandal | Health News

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Jakarta, Indonesia – Five-year-old Shena has been in the hospital since September. Her eyes move slowly when her mother calls her name but she almost doesn’t answer.

Her mother, Desi Permata Sari, says that Shena’s problems started when she fell ill with a fever. Worried, she took her daughter to the Jakarta hospital’s emergency department. Doctors did blood tests and sent them home with paracetamol syrup.

“I gave her the medicine for two days, then she threw up and also said she couldn’t urinate. I thought at first she might have spilled it,” Desi said.

“She was a healthy, smart girl. Suddenly all this happened just because of medicine. I am devastated.”

Shena was admitted to the pediatric intensive care unit. Her mother said she was a happy, talkative child who loved swimming and reading, and that she even learned to recite the Quran at the age of four.

Shena lying in her hospital bed.  She has a tube in her nose and a cane in her hand.  She is lying on her back with her head supported on the right side with a pillow.  Her eyes are open but she is looking up at the ceiling
Shena has been fighting for her life in the hospital since September [Courtesy of Desi Permata Sari]

Now, she is fighting for her life.

“Earlier, she had heavy internal bleeding. She was having seizures, and blood was coming out of her nose in her mouth, and there were wounds all over her head. She was in a coma for a month and a half. She bled non-stop for three weeks and was just skin and bones,” Desi said.

“Who wouldn’t break a mother’s heart… to see my healthy daughter who used to run around… now she can only lie down and needs help breathing. They had to make a hole in her neck. She drinks through a tube.”

This week, Shena cried during physiotherapy. It was the first time in months that her mother had heard her make any noise.

“I was so thankful that she can cry. It made me so happy because otherwise her condition is unresponsive.”

The medical emergency has taken a toll on the entire family.

With Desi caring for Shena in hospital and her husband working long hours as a security guard, as well as spending most of his free time at his daughter’s bedside, their son has to move in with a relative.

The family has drained their savings to pay for Shena’s medical care, and travel costs to and from the hospital. He earns about $300 a month. They have started eating smaller meals since Shena was admitted to the hospital, to save money.

“My husband does not rest. He goes back and forth to work, then comes here to look after Shena. Our savings are gone. She needs so many things that are not covered by public health insurance,” she said.

“In the beginning, I just wanted to get hit by a car because I’m so devastated. But I will fight for her, no matter how long it takes. I have to fight for my daughter.”

‘I’ll never go on’

Azqiara sitting on the pavement by the side of the road.  She is wearing jeans, pink and white shorts and a pink hat.  She is smiling and looks very happy
Four-year-old Azqiara loved skating and singing. She died days after taking the poisoned medicine [Courtesy of Solihah]

Desi and her husband are part of a class action suit launched by 25 families, suing government agencies and pharmaceutical companies after their children became seriously ill from taking tainted medicines.

Almost 200 children have died from acute kidney injury since last year and more than 100 have been injured.

Authorities later found that two ingredients commonly found in antifreeze and brake fluids — ethylene glycol and diethylene glycol — were linked to the children’s condition. The scandal in Indonesia came when it was reported that dozens of children died in The Gambia after consuming products that were contaminated with the same type.

The families are suing the ministries of health and finance, the drug regulator, and several pharmaceutical companies and suppliers.

One of the parents’ lawyers, Tegar Putuhena, told Al Jazeera that they also want the Ministry of Health to classify the kidney injury outbreak caused by the syrups as an “unusual event”. so that all treatment costs would be covered by the government.

“For those children who are still receiving treatment now, there are many treatments that are not covered by public health insurance. The government is turning a blind eye to it as if they have given everything,” he said.

At Tuesday’s first hearing, a procedural step where administrative documents were examined, Desi sat in a courtroom packed with three other mothers.

Panghegar standing in front of a red wall.  He is wearing an orange t-shirt with a print of black cartoon bats and jeans.  He has a hat on his head and a dinosaur toy in each hand.
Panghegar had recently turned eight years old when he died [Courtesy of Safitri Pusparani]

They held hands and cried together as they waited for proceedings to begin.

Among them were Siti Suhardiyati, mother of Umar Abu Bakar who died two months before his third birthday and Solihah, mother of four-year-old Azqiara, who loved skating and singing. She died just days after ingesting the poisoned medicine.

And Safitri Pusparani, 42, wearing a yellow shirt with the words “my son is my hero” printed on it.

Panghegar died in October.

She showed Al Jazeera a video of him, taken a month before his death. It was Panghegar’s eighth birthday.

“It’s my birthday, yippee!” he laughed, smiling at the camera.

“I don’t want my son to just be an idle statistic. He is my hero. We need to make changes so this doesn’t happen again,” said Safitri.

“As a mother, you can’t ask, when will you stop being sad? When will you move on? I will never go on. Over time, I don’t think it will hurt less but I will learn to accept the fact that I am a mother who has lost her son.”

Several of the parents initially raised doubts about the activities of the class. Many are still grieving or caring for children who are now seriously injured.

Close up photo of Desi Permata Sari taken in court.  Her eyes are closed and tears are falling down her cheeks.  She is wearing a black scarf and a black face mask
Desi Permata Sari cries as she attends a class action court hearing earlier this week [Ajeng Dinar Ulfiana/Reuters]

But Safitri is convinced that this is the right path and the parents hope that other families will join them.

“This may be a long road and it may not be easy. Whatever the danger, we have to be strong and we have to see it through,” she said.

“It’s not just about my child. If we remain silent, other children may suffer in the future. “

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