‘Living with two life-threatening diseases’: Five children at the centre of MP district’s lapses

A state-level inquiry team constituted by the state government to probe how the five children with thalassemia contracted HIV during blood transfusions has found major lapses — from not maintaining records of donors to failure in conducting HIV tests properly. On Friday, the state government suspended three health officials.

For the affected children and their families, the situation presents an unimaginable nightmare — endless hospital visits, shattered dreams and, above all, the fear of living with not one but two life-threatening diseases, one of which the patients are still unaware of.

The nine-year-old’s father said his son was just two years old when he was diagnosed with thalassemia, a genetic blood disorder that requires multiple blood transfusions to make up for less haemoglobin in the bloodstream.

For years, school remained possible with regular treatment.

That changed in March, when the family learned he was HIV positive.

“He has struggled so much at such a young age; now he has an additional burden. All I can do is smile at my son when he dreams of becoming a CID officer and give him hope,” the father said.

Elsewhere, the father of a three-year-old girl, who tested HIV positive, said the family learned about the infection only five months ago — after more than two years of regular blood transfusions for the child. However, while the authorities are treating this as one of the five cases, here the girl’s parents are HIV positive too.

Since the diagnosis, the family has sequestered itself, fearful of how the news will be taken by others.

“We cannot tell our relatives about this disease. We don’t know how to explain it. Even the hospital told us to remain quiet,” he claimed. “We don’t know who to ask for help anymore.”

The father of another 15-year-old spoke of his daughter’s unrealised dreams. “She studied till Class 6 but had to stop going to school about two years ago because her health kept deteriorating,” he said. “I wanted her to become a big officer one day.”

The families accused the district hospital of negligence. “They have done this to my family,” said the first father. “Everything changed because of them.”

Administrative nightmare

As grief and anger mounted among families, health officials and counsellors were grappling with the fallout — from breaking the news to tracing donors and reconstructing how the infections occurred.

So far, those suspended include the district hospital blood bank in-charge, Dr Devendra Patel, and laboratory technicians Ram Bhai Tripathi and Nandlal Pandey. In addition, a show-cause notice has been issued to Manoj Shukla, the former civil surgeon of the Satna district hospital, seeking an explanation for alleged administrative and supervisory failures.

Shukla told The Indian Express that “there was a breakdown in communication from the nodal officers who first got to know about the infection” and that “the civil surgeon’s office at the time was not informed”.

At the counselling centre for HIV-positive patients at the Satna district hospital, a counsellor, exhausted after a gruelling shift of tracking over 198 donors, struggled to relay instructions to her team.

“First, we had to break the news to the five families that their children were HIV positive. We also had to question parents about their sexual history to trace the source of transmission. These are very hard conversations when they don’t see a bright future for their child anymore,” the counsellor said.

Counselling teams were deployed for donor follow-up, but the response was limited. “About 125 people were contacted. Only two to four agreed to come forward. The rest denied donating blood or refused testing,” an official said.

A senior health official said the first donor-tracing exercise was halted in April due to safety concerns. “We stopped the operation in April because donors became abusive, and we did not have adequate manpower to handle the situation. Now we are tracing them again,” the official said.

Some donors allegedly issued threats. “We were told, ‘If you call again, we will shoot you. Do not come to our homes’,” a counsellor said.

It was Dr Sadhna, who heads the Integrated Hemoglobinopathy and Haemophilia Centre, who first raised an alarm after noticing unusual symptoms in one child. “An eight-year-old child with thalassemia developed a severe cough and cold. He was referred to Rewa Medical College, where an HIV test was conducted. The test came back positive,” she said.

Following this diagnosis, a broader screening exercise was undertaken. “After that, we tested all thalassemia patients under our care and found that five children were HIV positive,” she said.

On the scale of testing, Dr Sadhna said some patients could not be immediately traced.

“We have not been able to track down 10 patients. They are from other districts and have not been returning to us. Some are from Panna district. We have their details and will test them when they report back,” she said.

When contacted, Dr Devender Singh, the blood bank in-charge suspended on Friday, said that all blood units transfused to the children had undergone multiple layers of screening and tested negative at every stage.

“Blood samples are first tested at our blood bank and then sent to a private agency for triple testing. In all cases, the samples were found to be negative,” he said.

But he also admits that donor tracing has been a major challenge. “Nearly 50 per cent of donor data is either incorrect or outdated. Many addresses are outside Madhya Pradesh or are wrong,” he said.