Felix Liauw and his wife had been trying for a baby for seven years when Obelix was born, but joy soon became concern. Their son had breathing problems, and was experiencing vomiting and diarrhoea. He needed to go to neonatal intensive care.
There, the doctors diagnosed an infection. Obelix was given repeated prescriptions for antibiotics. But after two months there was no improvement.
Blood tests revealed that the root of Obelix’s problems was a rare condition, congenital short bowel syndrome, probably caused by a genetic mutation. It leads to repeated infections and abdominal problems.
Liauw, a paediatrician in Jakarta, Indonesia, decided to take his son home, and care for him there. “But then [after] two weeks, I lost him, due to sepsis.”
It was “the most depressing time in my life”, he says. Working as a doctor, he saw endless happy parents. “But I couldn’t have that same feeling. Every time, I just feel, ‘Why me?’”
Obelix succumbed to an infection with bacteria that could not be treated. Antimicrobial resistance (AMR), when pathogens no longer respond to existing drugs – earning them the nickname superbugs – is a growing problem that kills more than a million people a year. Many of them are children in poorer countries.
People who have grappled with drug-resistant infections say their stories are too often hidden behind statistics on the scale of the problem. “We want the world to not only think of us as numbers affected by AMR but also to see us as daughters, sisters, brothers, and sons and hear our plea for change,” they said in a recent Lancet commentary calling for meaningful patient engagement.
In September, the UN will hold a high-level meeting on AMR during its general assembly in New York to address the threats posed to global health, food security and development.
Liauw is now one of a growing group of advocates for the patients and families affected. He says that what happened to Obelix shows the problems faced by countries with fewer resources, including incorrect initial diagnosis and the spread of bugs inside health facilities.
“Proper diagnosis should be made before giving antibiotics,” he says. But a lack of access to laboratories can make it hard to identify the cause of illness, and establish which drugs to use.
Liauw believes Obelix’s infection was picked up in hospital. Keeping facilities clean is often a problem in low and middle-income countries, where 38% of health facilities lack clean water sources, and 35% lack water and soap for handwashing.
“If my son did not develop sepsis, he would have lived longer,” he says. “Maybe, if I knew the diagnosis earlier, I [could have] taken him home early, also. So maybe he would not have suffered from the other infections, from the hospital.”
Liauw now tells families of his patients with chronic diseases requiring ventilation that if they can afford it, it is better to buy or rent equipment and take their children home.
He has joined the Task Force of AMR Survivors, set up by the World Health Organization and chaired by Vanessa Carter. Carter sustained severe injuries in a car crash in South Africa in 2004, including a broken nose and jaw, smashed cheekbone and the loss of her right eye.
Over years she had multiple surgeries and, a few weeks after having a facial prosthetic implanted, she developed an infection. “I got into my car and I felt this moisture on my face. So I pulled down the rearview mirror and I saw this pus coming out of my face and I said, ‘What is going on?’” she says.
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Carter underwent a succession of debridement operations to attempt to clean the wound. Only after 11 months, in 2011, did she finally see pathology tests that revealed she had an MRSA infection, and that it was resistant to many antibiotics.
“I didn’t realise you get different types of infections. I just thought an infection is an infection. That’s as much as I knew,” she says. She needed “last-resort” antibiotics to clear it up, and further surgery.
“If I had known what antibiotic resistance was sooner – as a high-risk patient – I’d [have] made more informed decisions,” she says. She saw multiple doctors, but only one, after her final operation, stressed the importance of infection control.
“He spent 10 minutes with me saying, ‘You know, when you go home, I’m not just going to tell you to keep it clean. You need to try to sterilise the counter. You need to wash your hands literally every 30 minutes.’ He gave me a little bit more insight into infection prevention.”
She now knows it is important to complete a course of antibiotics, to space out doses consistently, and that antibiotics do not work for viruses.
Patients and the wider public are “a very big missing piece of the puzzle”, Carter says. She wants AMR to be as commonly understood as the link between sunburn and cancer.
“Back in the 1960s, my mother used to go on the beach and use cooking oil to get a suntan. But over the years it’s changed and most people when they go out into the sun now say, actually I need a factor 20 or factor 50 [sunscreen]. How do we people to that point?”