Rajasthan teenager dies after waiting for 14 years for heart surgery at AIIMS, says family

From the age of four in 2012, a girl from Rajasthan's Kota has been visiting Delhi's AIIMS for the treatment of a complex heart condition. Along with her family, she continued visiting for 14 years for tests and checks, hoping that she would eventually get the date for an operation. Unfortunately, she passed away on September 1 this year. Her dad, Mukesh Kumar Paryani, claims that in January 2014, they were asked to deposit Rs 1.25 lakh and arrange four units of blood, which they did. They were given an operation date on September 2, 2015, and told the surgery would be conducted after Diwali. However, it didn't happen. What followed was a series of delays and explanations.

One delay after another
Her dad, Paryani, alleges that the surgery didn't happen after Diwali, saying that the hospital doesn't have a conduit required for the procedure. Apparently, Paryani was given a contact number through which the conduit could be arranged and claimed that he paid Rs 30,000 for it. On December 16, 2015, his daughter, who was about 4 years old then, was admitted to AIIMS. But the surgery did not take place, yet again. Paryani said the family was told that she had a problem with one of her teeth and the operation would have to be postponed. He said he immediately arranged dental treatment, but the surgery was still not performed. The family continued making rounds of the hospital, he said. Paryani later approached an MP's office and filed a complaint with the Prime Minister's Office, alleging that their requests were not being heard. He claimed that he was subsequently asked to withdraw the complaint with assurances that his daughter's operation would be carried out. Similar assurances were given again in 2017, but the surgery did not happen, he alleged.

The family continued visiting the hospital until 2018, when Paryani said they were told to wait for another year and a half. The COVID-19 pandemic disrupted their visits, and Paryani said he did not visit AIIMS in 2020, 2021 or 2022. He returned after July 2023 and resumed seeking treatment. He said another examination was conducted in February 2023 after a machine broke down during an earlier appointment. He again requested that the operation be performed. Paryani said he filed another complaint with the PMO in June 2023. He was later contacted and told that his daughter's operation would be performed, but the surgery did not take place, he claimed. In December 2025, he said, the family met the head of the department and his daughter was examined again. They were subsequently told she would be given medicines and that no other treatment was available, he claimed.

AIIMS' explanation
AIIMS on Wednesday said its director has constituted a committee to examine the case, review the sequence of events and establish the facts, after taking note of media reports and concerns raised by the family. According to AIIMS, the girl was first evaluated at its cardiology OPD on October 10, 2012, and diagnosed with ventricular septal defect with pulmonary atresia, a complex congenital heart condition in which the normal pathway for blood flow from the heart to the lungs is absent or severely interrupted. The institute said she underwent detailed evaluations in 2013, including CT angiography, conventional angiography and cardiac catheterisation, to assess her cardiac anatomy and determine whether corrective surgery was possible. Following the evaluation, the treating team concluded in 2017 that corrective surgery was not feasible because of the underlying cardiac anatomy and complexity of the condition, AIIMS said. She was accordingly advised medical management and regular follow-up.

AIIMS said the family remained in contact with the institute and also sought further opinions on the possibility of surgery. As recently as last year, the head of the department of cardiothoracic and vascular surgery also advised medical management, while another senior cardiothoracic surgeon also gave a similar opinion, it said. The girl was brought back to AIIMS and was admitted on August 24 after her condition deteriorated and was evaluated, including for the possibility of a heart-lung transplant, the institute said. Around 3 am on September 1, she developed sudden fatigue and weakness followed by severe cyanosis, with her oxygen saturation falling to around 48 per cent, AIIMS said. Oxygen support was initiated around 3.30 am, following which she developed a hypoxic spell leading to cardiac arrest. Despite resuscitation efforts, she could not be revived and was declared dead at 5.06 am, the institute said. An autopsy is underway, and its findings will be considered along with her clinical records and other relevant evidence, AIIMS said.

What is ventricular septal defect
In patients who suffer from this condition named 'ventricular septal defect with pulmonary atresia ', the valve that controls blood flow from the heart to the lungs does not form. There will be a large hole between the heart's lower chambers, says the Mayo Clinic. Blood can't travel normally from the right ventricle to the lungs to get oxygen. The condition often needs special medicines, complex surgeries and reconstruction to create a stable blood pathway. 

Family seeks investigation
Paryani, however, alleged that no doctor or professor came to see his daughter between August 24 and the night of August 31. He has sought an investigation into his daughter's treatment and alleged that poor families whose children require complicated procedures often have to wait for years. "There is discrimination against poor patients. Those who have easy operations are operated on quickly, while those who need complicated operations are made to wait," he alleged.

AIIMS said the committee will examine the sequence of events, clinical records, investigations, treatment provided, expert opinions and the circumstances surrounding the death. The institute said it would cooperate with the committee and take action based on its findings. It also expressed condolences to the family and said it would await the committee's findings and autopsy report before drawing any final conclusions. 
'AIIMS' has more than 5K search volume in the past 3 hours on Google Trends. 
(With PTI inputs)