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

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 is otherwise almost completely unresponsive.

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

“I gave her the medicine for two days, after which she vomited and also said that she could not urinate. I initially thought that she was dehydrated,” said Desi.

“She was a healthy, smart girl. All of a sudden this all happened just because of the medicine. I’m devastated.”

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

Shena is lying in her hospital bed.  She has a tube in her nose and a cannula in her hand.  She is lying on her back with her head to the right supported by a pillow.  Her eyes are open, but she is looking 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.

“She used to have severe internal bleeding. She had seizures, and blood was coming out of her nose and mouth, and sores over her scalp. She was in a coma for a month and a half. She was bleeding nonstop for three weeks and she was just skin- a-bone,” Desi said.

“How the mother’s heart does not break … to see my healthy girl who used to run around … now she can only lie down and needs a breathing aid. They had to make a hole in her throat. She drinks through a tube.

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This week, Shena cried during a physical therapy appointment. It was the first time in months that her mother had heard her make a sound.

“I was so grateful that she can cry. It made me so happy because otherwise her condition would not respond.

The medical emergency has a devastating effect on the entire family.

With Desi taking care of Sena in the hospital and her husband working long hours as a security guard, and also spending most of his free time at his daughter’s bedside, her son had to move in with a relative.

The family drained their savings to pay for Shena’s medical care and the cost of traveling to the hospital.

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

“At first 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 is sitting on the sidewalk on the side of the road.  She is wearing jeans, a pink and white short and a pink hat.  She smiles and looks really happy
Four-year-old Azqiara likes to skate and sing. She died days after taking the poisonous medicine [Courtesy of Solihah]

Desi and her husband are part of a class action lawsuit launched by 25 families who sued government agencies and pharmaceutical companies after their children became seriously ill from taking contaminated drugs.

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

Authorities later found two ingredients typically found in antifreeze and brake fluids — ethylene glycol and diethylene glycol — were linked to the children’s conditions. The scandal in Indonesia came as dozens of children in Gambia were reported to have died after consuming similar contaminated products.

The families are suing the Ministry of Health and Finance, the drug regulator, and several pharmaceutical companies and suppliers.

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

“For those children who are still being treated, there are many treatments that are not covered by public health insurance. The government turns a blind eye to it as if they have provided everything,” he said.

At the first hearing on Tuesday, a procedural step where administrative documentation was reviewed, Desi sat with three other mothers in the packed courtroom.

Panghegar is 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 holds a dinosaur toy in each of his hands.
Panghegar had recently turned eight years old when he died [Courtesy of Safitri Pusparani]

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

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

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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 a month before his death. It was Panghegar’s eighth birthday.

“It’s my birthday, Yippee!” he shouted, smiling into the camera.

“I don’t want my son to be just a statistic without action. He is my hero. We have to make changes so that this doesn’t happen again,” Safitri said.

“As a mother you can’t ask, when will you stop being sad? When will you move on? I will never move on. In time, I think it will not hurt less, but I will learn to adapt to the reality that I am a mother who lost her son.”

Several of the parents initially expressed doubts about the class action. Many are still deep in their grief or caring for children who now have debilitating injuries.

A close-up of the Desi Permata Sari taken in court.  She closed her eyes and tears flowed down her cheeks.  She is wearing a black headscarf and a black face mask
Desi Permata Sari shouts as she attends court hearing for class action lawsuit earlier this week [Ajeng Dinar Ulfiana/Reuters]

But Safitri is convinced that it is the right way and the parents hope that other affected families will join them.

“This will probably be a long road and it probably won’t be easy. Whatever the risk, we have to be strong and we have to go through it,” she said.

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

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