When 28-year-old Backiyaraj woke up one morning in September 2013, he had a puffy and swollen face. He visited a local physician who informed him that his kidneys had failed, and that he needed a transplant, unless he wanted to be dependent on dialysis all his life. For the Chennai resident, this was a jolt out of the blue. He shored up the courage and went to Stanley Medical College hospital for treatment. But even in his worst nightmares he had not imagined that the hospital would only make his condition even worse.
A few days after the diagnosis, Backiyaraj started undergoing dialysis twice a week. His mother, who was then 57 years old and healthy, was listed as his donor and the two started preparing for a kidney transplant in November 2013. An unexpected knee issue and subsequent surgeries delayed his transplant procedure by months. He was again back to being dependent on dialysis till he healed from the surgery. Seven months after the knee surgeries, he was ready to undergo the kidney transplant.
Just before the surgery, his blood tests returned positive for Hepatitis C virus, or HCV, which can cause serious liver ailments. And he had contracted it from the contaminated equipment used by the hospital during dialysis.
Never-ending medical woes
â€śI was broken when I came to know about the infection,â€ť he recounts, speaking to TNM. Since July 2014, he has continued to battle the virus in his body. But the situation is dire now since his mother, who was his original donor, has now become ineligible to donate kidney due to health and age-related ailments. â€śNow she has got diabetes and her health has declined substantially. She is not in a position to donate kidney to me,â€ť he explains.
He says that the hospital staff have stopped helping him, and instead rebuke him. â€śThese days, if I go to Stanley and ask for priority, they guilt me by saying that if they give a kidney to me, then they are depriving somebody else of a kidney. Now I donâ€™t know what to do,â€ť his says, his voice trailing off.
Backiyaraj is one of the 18 patients said to have acquired HCV during routine dialysis in 2014. The patients fought a case of medical negligence against the government hospital, and it went up to the Madras high court. The court awarded Rs 5 lakh interim compensation to 16 of them, since the hospital said that the other two were infected previously. A one-man inquiry commission under RS Ramanathan, a retired judge of the Madras HC, was put in place to determine the quantum of final compensation to be awarded to the affected parties. Two years since, the committee is yet to submit its report â€“ because the government is yet to appoint a pleader to the case.
Backiyarajâ€™s story isnâ€™t an outlier. The public health systemâ€™s continued betrayal after having been the root cause of their ongoing medical trauma is a running theme among most of the other victims of the Stanley Medical disaster of 2014, which did not spare even young kids.
Fifteen-year-old Manishankar was diagnosed with kidney issues when he was just a toddler and was under medication till in 2014, when his kidneys gave up. He and his mother Shanthi reached Stanley hospital in Chennai from Padappai in Kanchipuram district in May 2014 to undergo dialysis at the hospital and subsequently have a transplant, which Shanthi was herself willing to donate. Their dreams crashed in July 2014, when a routine dialysis left Manishankar infected with HCV. Manishankar is now 20 years old and is still dependent on dialysis for survival.
Manishankarâ€™s mother Shanthi is helpless. Her sonâ€™s kidney transplant has got cancelled thrice since 2014 due to various reasons. In July 2014, when they were one test away from getting approved for a kidney transplant, Manishakarâ€™s blood tested positive for HCV. This led to the hospital cancelling the transplant procedure and put the boy back on dialysis.
â€śWhat pains me the most is that they asked us to get out of the hospital since my son had HCV. I had to fight tooth and nail to keep him there since it was the hospitalâ€™s fault that he got the infection. The support of a few others who had also contracted the infection around that time gave me the strength to stand my ground,â€ť says Shanthi.
The transplant got cancelled the second time due to high White Blood Cell count, and the third time for reasons Shanthi till date doesnâ€™t know. As years went by in litigation, Manishankarâ€™s growth stunted and he started getting other health problems. Now Shanthi is not sure if she would give a kidney to her son. â€śNow I am not even considering becoming a donor since my son has to be carried around everywhere and is totally dependent on me. If I donate my kidney, then who will take care of him when I am on bed rest? He was once an active and a naughty boy who would make us run behind him,â€ť she laments.
Fighting the system
The financial implications of hospital-acquired transfusions are not bearable for many families, and it is only with a undying spirit to fight the system that some manage to survive.
In July 2014, Thilagavathy and her 42-year-old husband Karthikeyan reached Chennai from Kumbakonam for a kidney transplant. Karthikeyan suffered a total kidney failure earlier that year and was undergoing dialysis in Trichy. As medical expenses mounted, the couple decided to get a kidney transplant, hoping to put an end to their draining resources and mental misery. Thilagavathy, who was quite acquainted with dialysis by then, opted to donate a kidney to her husband. Just after 10 sessions of dialysis at Stanley, her husbandâ€™s blood tested positive for HCV.
If it wasnâ€™t for her attentiveness, the infection could have been blamed on the previous hospitals. Karthikeyan had undergone dialysis at Gastrocare and Kauvery hospitals in Trichy and had blood test results from both the places, in which the results were negative for HCV. When his wife and her reached Stanley hospital in July, the hospital insisted on a fresh blood test, which was also HCV negative.
â€śAfter 10 dialysis, the hospital staff asked us to take blood test again, which I refused. I told them that the most recent one was taken 20 days ago and that I can show the results to them. The staff did not agree and made me order another blood test for my husband, which returned positive for HCV infection,â€ť she says. Blood tests from three different hospitals in a span of 45 days helped Thilagavathy realise that Stanley hospital was at fault.
â€śThat gave me strength to fight, since I had evidence. Chennai-based citizens action group Arappor Iyakkam helped us in the ordeal and got us the interim compensation of Rs 5 lakh,â€ť she adds. Having lost faith in the public health system, Karthikeyan later got a kidney transplant in 2017 from a private hospital and is now fine.
â€śThe victims conveyed their fear of undergoing transplant in Stanley hospital and wanted to get it done elsewhere. So, we are crowdfunding money and helping them get it done. One patient got his transplant very recently with our help. We are now in plans of funding the transplant for other three patients,â€ť says Jayaram Venkatesan, Convener of Arappor Iyakkam. The organisation also helped the victims get their interim compensation and has helped them file their statements with Justice RS Ramanathan. â€śWe have filed separate affidavits with the Justice and are waiting for the report now. Our part here is done for now,â€ť he adds.
However, delays from the side of the state government is what has caused this delay, says Justice RS Ramanathan. Speaking to TNM on Thursday, he said that there were no representatives from the government to submit arguments in the case. â€śThe state government has not appointed anyone to appear for hearings and hence the case is pending. I have heard the arguments from the petitionerâ€™s side and have got the statements from victims. If the arguments of the government are also heard, I will submit my final report to the HC,â€ť he says.