New Delhi: A 15-year-old girl from Kota, who had been visiting AIIMS Delhi from the age of two for a complex congenital heart defect, died in the hospital early Tuesday, 14 days after TOI reported her family’s long wait for corrective heart surgery.Tanvi was admitted to AIIMS about two weeks ago. TOI had reported on Aug 18 that she had been making the rounds of AIIMS for over 13 years, with her father alleging that surgery dates were fixed and later changed but the corrective procedure was never done.Her father, Mukesh Pariyani, said Tanvi was admitted after discussions with doctors and was being evaluated for a possible transplant. Doctors sought several documents and investigations, including a heart evaluation.Asked about her death, Dr V Devagourou, professor and head of the department of CTVS, CT Centre, said that Tanvi was diagnosed with ventricular septal defect (VSD) with pulmonary atresia in 2012 and evaluated for surgery in 2013. He said “surgery was ruled out in 2018 and she was subsequently managed medically. She was admitted on Aug 24 for evaluation for a possible heart-lung transplant.”He said that Tanvi underwent an endoscopy Monday as part of the transplant work-up. “At 2.50 am, Tuesday, she complained of fatigue and weakness and became cyanotic, with her oxygen saturation falling to 48%. She was started on oxygen at 3.30 am and subsequently suffered a hypoxic spell resulting in cardiac arrest. Despite efforts to revive her, she could not be saved and was declared dead at 5.06am.”Neither AIIMS, nor the doctors responded to TOI’s specific question on why the surgery was not conducted after her 2013 evaluation and what led to it being ruled out in 2018.Tanvi was first taken to AIIMS in 2012. An AIIMS document dated Jan 31, 2014, diagnosed “VSD + pulmonary atresia” in her case and recommended “unifocalisation & conduit” surgery, estimated at Rs 1.2 lakh. The family alleged that surgery dates, fixed in 2015, eventually did not materialise.Pariyani said an endoscopy was performed around 7 pm on Monday and that his daughter’s condition deteriorated later that night. She died around 3.30 am Tuesday, he said.The death comes days after an AIIMS doctor told TOI on Aug 28 that the child was “presently admitted for work-up for possible heart and lung transplant.” The doctor said an earlier estimate of around Rs 1.5 lakh was probably for surgery, when the child was considered operable. However, because the pulmonary artery was now absent, corrective surgery was no longer possible and a heart-lung transplant was being considered.Records show that she remained under follow-up. A 2018 assessment noted that major blood vessels supplying her lungs were absent and described her cardiac anatomy as complex. The doctor had earlier told TOI that she was not a candidate for corrective surgery because the pulmonary arteries were essentially absent, and surgery could prove fatal if the anatomy was not suitable.Pariyani said he was not given a satisfactory explanation for his daughter’s death. He alleged that hospital staff repeatedly asked him for documents and, at various points, pressured him to take discharge. He also said he suspected a conspiracy and wanted the circumstances leading to his daughter’s death investigated.Pariyani has not yet taken his daughter’s body from the hospital, saying he wants answers on the circumstances surrounding her death.The allegations could not be independently established.
