More than two years ago, Raman, who is 15, was playing with friends near his home in Burari, an urban slum in east Delhi, when he coughed and noticed there was blood in his phlegm. He felt worried and wanted to tell his parents but they weren’t home.

“I went to my friend’s place,” he said. “But they did not believe that I could have blood in sputum. They were not taking it seriously.” Finally, when his mother got home, she took him to hospital.

He was diagnosed with tuberculosis. This infectious airborne disease, which many still associate with Victorian-era novels, is under control in most developed countries but is still rife in India. It ravages the lungs and can kill unless it is treated.

Raman discovered he had multidrug-resistant TB after nine months of ineffective treatment (Madlen Davies/TBIJ)

Raman was given medication, a cocktail of four antibiotics, for six months. A combination of the disease and side effects of the drugs made him feel dizzy, nauseous and weak.

After six months he was no better and was still coughing up blood, so they continued the medication for another three months. Still the bleeding continued so he was sent to another clinic for tests.

It was discovered he had multidrug-resistant TB (MDR TB). This meant two of the drugs he had been given for nine months had been ineffective, so he was still ill with the infection.

In one part of the slum where Raman lives, two members of every family are being treated for TB (Madlen Davies/TBIJ)

He would now need treatment for another two years, comprising of six months of injections and a different mix of antibiotics. The drugs he needed can have severe side effects, including deafness, blindness, seizures and psychosis – but can cure the disease if taken systematically.

This long, difficult regime of drugs, which leaves children weak, sometimes deaf, and plunges families into poverty because treatment is costly, is becoming more common in India as cases of drug resistant TB continue to rise. Less than half of people in India with MDR TB are cured.

An even more deadly form of the disease exists, extensively drug-resistant TB. People with this type have only a one in three chance of being cured. These rates are much lower than the global average.

People who are malnourished and living in crowded and unsanitary conditions with poor ventilation and little sunlight are more likely to catch the TB bacteria (Madlen Davies/TBIJ)

“It’s absolutely unacceptable,” said Dr Furin, a practising doctor and lecturer on global health and social medicine at Harvard Medical School.

The rise of drug-resistant TB is creating new challenges, especially for children, who are much more vulnerable to the disease and for whom the effects and side effects of treatment are greater. Experts said drug resistance threatens to hamper the gains made in controlling the disease in India, abandoning another generation of children to years worth of debilitating treatment.

Children with MDR TB are poorly served in India and around the world, said Dr Furin. “We do such a bad job for kids who are infected with and sick from MDR TB,” she said. “It’s a great global shame.”

Though it may not seem like it, Raman is lucky his disease was diagnosed and treated. Around the world a million children under 15 suffer TB a year and 234,000 – nearly one in four – died in 2017, according to the World Health Organisation’s latest figures. More than 96 per cent of children who died from TB in 2015 were not receiving any treatment for their disease.

TB is known as a disease of poverty as people who are malnourished and living in crowded and unsanitary conditions with poor ventilation and little sunlight are more likely to catch the TB bacteria and pass it to their family. In India a quarter of the urban population lives in slums.

MDR TB can develop when people are prescribed the wrong cocktail for their strain of TB, or they fail to take their medicines properly for the whole course. But in children nearly all catch it from another person, usually a family member with the disease.

In India a quarter of the urban population lives in slums, where people are more likely to catch TB (Madlen Davies/TBIJ)

Raman lives in an urban slum known as Burari, east of Delhi. The streets are crowded and narrow with open drains, which flood with sewage water when it rains. There are houses with five people living in one room, and in one part of the slum two members of every family are being treated for TB, according to Jyoti Gupta, a counsellor for NGO TB Alert. Raman was told to mix his sputum with hot water in a steel box before throwing it into the drains, but others aren’t so diligent, so the disease spreads easily.

The disease has devastating effects on children’s lives. The drugs prescribed for MDR TB have severe side effects including vision problems, seizures, gastrointestinal problems, vomiting, dizziness, skin discolouration, hepatitis, nerve damage (causing weakness, numbness and pain), an underactive thyroid, epileptic seizures, anxiety, depression and psychosis. Around half of people taking the injectable drugs go deaf.

“If you’re a three-year-old and you lose your hearing on the injectables, your life is ruined, you don’t acquire language, you can’t go to school,” said Dr Furin.

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There is a lot of stigma attached to TB, and children face being shunned by other children or by parents who fear their own child might catch the disease. Children with TB often feel isolated as they are too weak to play with their peers. Sahil, 17, who also lives in Burari and contracted MDR TB one-and-a-half years ago, says his sister is now his only friend. In 2011, a 14-year-old girl from Kalapather, a village in West Bengal, set herself on fire as her health deteriorated due to TB.

Like Raman, it is estimated hundreds of thousands of children have to leave school every year because of TB. This is because they are too weak to study, or because of the stigma of the disease.

The disease is a lot more difficult to diagnose in children than in adults, because they don’t always have typical symptoms of TB, like a cough. Young children don’t usually produce much sputum which can be examined under a microscope or sent to a lab. If TB is suspected then in order to diagnose it doctors have to take liquid from the child’s stomach, which is invasive and not always accurate. Children are also less likely to develop lesions in the lungs which can be seen on X-rays.

People with drug resistant TB have only a one in three chance of being cured (Madlen Davies/TBIJ)

If children go undiagnosed and untreated they are more likely to develop severe forms of the disease, which spread to the brain, bones and joints. It is extremely difficult to get children to swallow tablets or have an injection for a prolonged period.

“Children are very reluctant to take injections for six months,” said Jyoti Gupta, a counsellor for NGO TB Alert. “They start crying and complain a lot.”

While there are now flavoured formulations of TB drugs designed for children, some of which can be dissolved in water or mixed with food, none exist for MDR TB. Health workers have to crush up pills, which means the dose isn’t exact. All these factors mean children miss doses, fail to take their medicines for the full course, or are treated with an imprecise dose, which fuels resistance and perpetuates the spread of drug-resistant TB.

If a person is diagnosed with TB, a health worker should visit their house and test all the family members for TB, then treat children who have the disease. This has been shown to increase the number of people diagnosed by two-thirds in developing countries. Children who live in a house with someone with TB, particularly drug-resistant TB, but don’t yet have the disease, will still carry the bacteria and should be given antibiotics to prevent them falling ill.

This is not routinely done in India, despite the chances of being cured of drug-resistant forms being low. Doctors are scared to give healthy children antibiotics with side effects, and there has been confusion over the best drug to use. Only 11 per cent of children under five in India receive this preventative therapy, latest WHO figures show.

The International Union Against Tuberculosis and Lung Disease, a scientific group, said this is just one example of how children with TB are neglected, with policies prioritising treating adults who are more infectious because they cough up more phlegm.

There is a lot of stigma attached to TB, and children face being shunned by other children or by parents who fear their own child might catch the disease (Madlen Davies/TBIJ)

Paul Jensen, director of policy and strategy at the union said the neglect is an abuse of their human rights: “Their rights to health are being systematically violated by health systems all around the world.”

Two new drugs, bedaquiline and delamanid, have been approved to treat MDR TB, and are the first to have been developed in nearly 50 years. An important study found a three-fold reduction in deaths in adult patients receiving bedaquiline. The WHO has now recommended phasing out injectable drugs, which have severe side effects, in adults, and prescribing oral drugs including bedaquiline instead.

Yet as children were not included in the clinical trials for bedaquiline, there is no data on whether it is safe or the correct dose to give. WHO does not currently recommend giving bedaquiline to children and as a result they are still given the injectables.

Dr Furin believes children with MDR TB should be given bedaquiline as they are at greater risk of the side effects of the older injectables, which were also never tested on children. “People are like ‘Oh we have to protect the children, we shouldn’t give them the new drugs’,” she said. “Then ironically you end up being stuck treating children with the old drugs that were never tested on children. People are so afraid of hurting the children they do things that make it worse for the children.”

In one part of Raman’s slum, two members of every family are being treated for TB (Madlen Davies/TBIJ)

Delamanid is the drug of choice for children with MDR TB. Yet within India it is only available in six government hospitals across seven states. Dr Furin believes this is a mistake, as Mumbai, the epicentre of MDR TB, will not receive the drug when there are children there who desperately need it. “Mumbai needs delamanid, it’s the drug of choice for children down to the age three years,” she said.

Raman’s father Santosh, 43, worked as a taxi driver, but he was hurt in a car accident a few years ago. This means he can only work for up to six hours a day rather than the 14 he used to. Since, the family’s income has dropped they have to make sacrifices to pay for nutritious food to help Raman get better, and for trips back and forth to the hospital.

Raman said he wants to be a science teacher when he grows up. His treatment will be over in February 2019, and his family are praying he won’t relapse. Santosh wishes his son didn’t have to spend his school years ill.

“He is just a child,” he said. “This is a time when he should be playing around when instead he is suffering so much because of these diseases.”

My two-year-old daughter caught extensively drug-resistant TB

My daughter was two-and-a-half when we decided she and her elder brother should fly from California [state changed to protect anonymity] and stay with her grandparents in Mumbai to learn about Indian culture. We enrolled my daughter and her brother, who is two years her elder, in a part-time daycare programme. We were very well aware of TB so the week we landed in India we administered the BCG vaccine to both of them.

When I came to pick them up three months later and I noticed she started having a fever. We took her to a local paediatrician who gave her ibuprofen, told her it should get better over time. Unfortunately her fever never came down, it kept getting worse over time.

We didn’t assume anything serious until we got back to the US. Then she started having very high fevers of 105F (41C).

We took her to her local paediatrician, she ran blood tests, urine tests, tests for common infections and nothing was detected. That’s when I decided to take her to the emergency room because I knew something was wrong. Her fevers were getting higher and higher, she was losing weight.

At the hospital a chest X-ray found a spot on her lungs. They thought it was pneumonia, which is common in kids. They did not want to admit her. I pleaded with them and they finally relented.

She was admitted and they gave her intravenous antibiotics for regular pneumonia for four days. Her fever still didn’t go down. One night they recorded a temperature of 108F (42C). And that’s when I knew it was something serious like typhoid or TB.

Privately I went to a lab and got her blood checked using a test for TB. It was positive. I let the physicians know as soon as I found this test was positive. The team refused to buy into the idea. They said this is just a regular pneumonia, she’ll get better, give it some time. I was angry they were dismissive of the test.

After that I insisted she get a CAT scan on her chest. It’s not to be done lightly given that its radiation. The team did not want to subject a three-year-old girl to radiation, but they finally agreed as she wasn’t getting better.

That’s when it showed findings that were very suggestive of tuberculosis.

We were shocked and we were very concerned about our daughter. We knew what it implied if she did have TB, she would have to be quarantined. She would have to stay at home, it would be a big change in all our lives.

She was given antibiotics for TB and they took samples to be grown in a lab. Because she was not coughing, her sputum could not be tested. So they put a tube into her stomach and over three days an early morning sample of her stomach fluids to test it for TB.

This turned out to be the most crucial test because eight weeks later one of the samples grew a bacteria and it was found she had extensively drug-resistant TB. They were able to do further tests on the bacteria to find out which antibiotics it was sensitive to. In total it took 12 weeks to find out she had extensively drug resistant TB, even in a country like America.

Once I knew this was the kind of TB she had, I read as much as I could about it; and found a very poor prognosis. More than half of kids with this disease passed away. So we were scared we were going to lose our daughter.

The toughest thing was explaining it to both our kids. My daughter in the first month of treatment was quarantined even at home. She and I would spend most of our time in the basement and my wife and son would spend most of their time on the first floor. They both missed each other a lot. They asked: “why can’t we play with each other?” In the back of our minds we were always worried she could have transmitted it to her brother.

It was very nerve-wracking when she was put on medication. She had her intravenous drugs in the morning, then in the evening she would take her pills. Some were crushed, some mixed in chocolate pudding. So by the end of the whole ordeal she hated chocolate.

It wasn’t like there were alternative medications to try because her TB was extensively drug-resistant. We had to maximise her chance of surviving this infection. Faced with that, we agreed she might have some permanent side effects of this. We had to face the reality she might lose her vision, her hearing, her balance, her kidneys. She has some skin discolouration now, but we have our daughter.

We never could be confident it was going well. TB is notorious for relapsing, so even though initially you might respond to medications it can develop resistance over time. That’s why she was on five medications. Every time she falls sick we start worrying. We’ll always continue to be haunted about that.

We didn’t tell anyone about her TB because we didn’t want other parents or kids to ostracise her. She didn’t leave the house for six months until the doctor was happy she wasn’t infectious. We sent a letter to preschool from a doctor explaining her condition and that she was on treatment and wasn’t infectious.

She was not able to have any play dates, have friends come over. She did not celebrate her birthday for two years. We just bought a small cake at home and just did a small celebration. We had no social life for two years. We couldn’t travel because a nurse had to come to our home and observe us giving medication to our daughter. We just withdrew ourselves for two-and-a-half years.

She has been incredibly lucky. In any other country it would have been very difficult to pull the coordinated treatment needed. There are lots of things you have to monitor for. We had a whole team rooting for her. It’s possible in resource rich countries, it’s an incredible challenge to pull this off in the developing world.