Jakarta, Indonesia – 5-year-old Shena has been hospitalized since September. When her mother calls her name, her eyes move slowly, but otherwise she is largely unresponsive.
Her mother, Desi Permata Sari, says Shena’s problems started when she fell ill with a fever. Worried she took her daughter to the emergency department of a hospital in Jakarta. Doctors performed blood tests and sent her home with paracetamol syrup.
“I gave her the medicine for two days, after which she threw up and also said she couldn’t urinate. I initially thought she might be dehydrated,” said Desi. said.
“She was a healthy, smart girl. Suddenly all this happened because of the drugs. I am devastated.”
Shena was admitted to the pediatric intensive care unit. Her mother said she was a happy and talkative child, she loved swimming and reading and she even learned to recite the Koran at the age of four.
Now she is fighting for her life.
“Previously, she was bleeding profusely. She was having seizures, was bleeding from her nose and mouth, and had sores all over her scalp. She was in a coma for a month and a half. Yes, she had been bleeding for three weeks.
“It would not break any mother’s heart…to see my healthy girl who used to run around…now she can only lie down and needs breathing aid. They are down her throat.” I had to pierce it. She drinks through a tube.”
This week, Shena cried during her physical therapy appointment. It was the first time in months that her mother had heard her.
“I was very grateful that she could cry. Her condition would otherwise be unresponsive, so I was very happy.”
The medical emergency had a devastating effect on the entire family.
With Desi taking care of Shena in the hospital, her husband working long hours as a security guard and spending most of his free time at her daughter’s bedside, her son had to move to a relative’s house.
The family used up their savings to pay for Shena’s medical bills and transportation to and from the hospital.
“My husband doesn’t take time off. He comes and goes from work to come here to take care of Shena. Our savings are gone. We need a lot of things that public health insurance doesn’t cover.” it is,” she said.
“At first I was so devastated that I just wanted to get hit by a car. But no matter how long it takes, I will fight for her. I have to fight for my daughter.” it won’t.”
“I never move on”
Desi and her husband are part of a class action lawsuit started by 25 families suing government agencies and drug companies after their children became seriously ill after taking contaminated drugs.
Since last year, nearly 200 children have died from acute kidney injury and more than 100 have been injured.
Officials later discovered that two ingredients commonly found in antifreeze and brake fluid, ethylene glycol and diethylene glycol, were associated with the condition in children. A scandal in Indonesia broke out when dozens of children in The Gambia were reported to have died after consuming similarly contaminated products.
The family is suing the Ministry of Health and Treasury, drug regulators, and several pharmaceutical companies and suppliers.
Tegar Putuhena, one of the parents’ lawyers, told Al Jazeera to have the health ministry classify the syrup-induced acute kidney injury outbreak as an “extraordinary event”, with all treatment costs covered by the government. said he hopes
“There are a lot of treatments that are not covered by public health insurance for children who are still in treatment. .
At the first hearing on Tuesday, Desi sat in a packed courtroom with three other mothers during the procedural stage where administrative documents were checked.
They held hands and cried together as they waited for the procedure to begin.
Among them were Siti Suhardiyati, mother of Umar Abu Bakar, who died two months before her third birthday, and Solihah, mother of Azqiara, a four-year-old who loves skating and singing. She died just days after ingesting the poisonous drug.
Safitri Pusparani, 42, wears a yellow shirt with the words “My son is my hero” printed on it.
Panhegar died in October.
She showed Al Jazeera a video of him taken a month before his death.It was Pangegar’s eighth birthday.
“It’s my birthday, yuppie!” he shrieks with a smirk at the camera.
“I don’t want my son to be just a statistic without action. He’s my hero. I need to make changes so this doesn’t happen again,” Safitri said.
“As a mother, I can’t ask when will I stop grieving? When will I move on? I never move on. You learn to adjust to the reality of being a mother who lost her son.”
Some parents initially expressed doubts about the class action lawsuit. Many are still grieving or caring for children with debilitating injuries.
However, Safitri is convinced that it is the right path and the parents want other affected families to join them.
“This is probably going to be a long road and probably not easy. Whatever the risks, we have to be strong and we have to make it through,” she said. .
“This is not just my child’s problem.