Fifteen-year-old Tanvi from Kota passed away early Tuesday at AIIMS Delhi during work-up assessments for a possible heart-lung transplant.
Tanvi had visited AIIMS since age two for a complex congenital condition diagnosed as ventricular septal defect with pulmonary atresia.
Her father, Mukesh Pariyani, alleged the family waited over 13 years for corrective heart surgery, but scheduled dates repeatedly lapsed without the operation taking place.
A 15-year-old girl from Kota died at AIIMS Delhi early Tuesday, nearly two weeks after The Times of India published a report on her family's 13-year wait for surgery to correct a complex congenital heart defect.
Tanvi had been going to AIIMS since age two. Her father, Mukesh Pariyani, said she was admitted about two weeks ago after talks with doctors and was under assessment for a possible transplant. On Aug. 18, TOI reported that the family had spent more than 13 years going back and forth to the hospital and alleged that dates for surgery were set and then changed, without the corrective operation ever taking place. Pariyani said doctors asked for several papers and investigations, including a heart evaluation, after she was admitted.
Medical Timeline
Dr V Devagourou, professor and head of CTVS at CT Centre, said Tanvi was found to have ventricular septal defect with pulmonary atresia in 2012 and was assessed for surgery the following year.
An AIIMS note from Jan. 31, 2014 described the case as “VSD + pulmonary atresia” and advised “unifocalisation & conduit” surgery, with the cost put at Rs 1.2 lakh. The family says dates for surgery were set in 2015 but never happened.
Devagourou 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. Records show she remained on follow-up. A 2018 assessment said the vessels feeding her lungs were absent and called her heart anatomy complex.
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 added that the earlier estimate of about Rs 1.5 lakh was likely for surgery, when she was still thought to be operable.
Corrective surgery was no longer an option because the pulmonary artery was absent. The doctor had earlier told TOI that she was not a candidate for the operation because the pulmonary arteries were effectively missing and the procedure could be fatal if the anatomy did not fit.
AIIMS and the doctors did not respond to TOI’s specific questions about why surgery was not done after the 2013 evaluation or what led to its being ruled out in 2018.
Final Hospital Hours
Pariyani said an endoscopy was done around 7 pm Monday during the transplant evaluation, after which his daughter worsened later that night.
Devagourou gave a detailed account of the final hours. He said, “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.”
Pariyani gave a somewhat earlier time, saying she died around 3.30 am Tuesday.
Family Questions
Pariyani said he was not given a satisfactory explanation for his daughter’s death and alleged that hospital staff repeatedly asked him for documents. He also alleged that staff pressured him at different points to take discharge. He 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. He said he wants an explanation of the circumstances surrounding her death.
