The battle began for Mrinalini and Himangshu Seth in 2005. Parents to two young girls, they had just been informed that their younger daughter, nine-month-old Saloni, had congenital heart disease. At the age of two, Saloni underwent a Ross procedure. Four years later, the family was informed that she was terminally ill – the procedure had failed – and she had only six months to live. On Congenital Heart Disease Awareness Week, IC spoke to Mrinalini Seth about Saloni, the fight to save her life that brought the family to the US, and the work of the Saloni Heart Foundation.

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IC: Tell us about your daughter, Saloni.

Mrinalini Seth: Saloni was born in Delhi, India, and was diagnosed with congenital heart disease (CHD) at nine months old. Despite being educated and living in Delhi, we faced immense challenges in finding reliable specialized medical care. In our case, Saloni underwent a Ross procedure at the age of two, which we later learned was unnecessary. We were kept in the dark about her worsening condition – we could see that her health was declining but after a lot of queries, we were told by the doctors that she was terminally ill. She was six at the time and had only six months to live.

IC: How did you find treatment for Saloni in the U.S.?

Mrinalini Seth: In our desperate search for options, we discovered potential treatments at Stanford Children’s Hospital. Around that time, Dr. V. Mohan Reddy was visiting India and we were able to connect with him. After evaluating Saloni, he assured us that he could treat her despite the risks. We then decided to move to the US for her treatment. 

After the surgery here in 2011, the transformation was remarkable. A child who could barely walk suddenly gained energy and was running, biking, and swimming. Her health improved dramatically. 

IC: What happened after Saloni’s recovery?

Mrinalini Seth: For seven years after her surgery, Saloni lived a full life, but the complexity of her case due to incorrect treatments in India finally caught up with her. In 2018, she suffered a stroke and passed away.

The grief was unbearable as parents. However, we also gained perspective on the stark differences in medical care between India and the West. While CHD treatment in the U.S. boasts a 95% survival rate, India continues to lose 95% of its CHD-affected children. We thought of what we could do to help underserved families with CHD in India. Within seven months of Saloni’s passing, we established the Saloni Heart Foundation.

IC: What is the mission of the Saloni Heart Foundation?

UP CM, Yogi Adityanath visits the Saloni Heart Center children’s ward at Lucknow. Photo Courtesy: Saloni Heart Foundation.

Mrinalini Seth: CHD is one of the leading causes of mortality in infants and children worldwide. In India, due to the vast population, approximately 240,000 children are born with CHD each year, in the US it is about 40,000. Unfortunately, while the U.S. can treat 95% of CHD cases, India loses around 95% of the children with CHD due to a lack of proper treatment.

India has about 15 specialized pediatric heart centers, both public and private, collectively treating only about 15,000 children annually. This leaves a significant number of children untreated, with many families suffering physically, emotionally, and financially.

Our foundation operates on three main pillars:

  1. Second Opinions for Families: From our experience, we knew how crucial a second opinion could be. In India, many patients lack access to proper diagnoses and treatment options. Through our foundation, we have provided around 6,500 second opinions by connecting families with our team of specialist doctors in both the U.S. and India. We also guide families to hospitals in India that can offer necessary treatments and connect them with financial aid organizations, including our own.
  1. Scholarships for Medical Students: Saloni aspired to become a pediatric cardiothoracic surgeon since pretty much all her life she had been surrounded by them. To honor her dream, we initiated a scholarship program to support medical students. We currently sponsor 20 students, covering tuition, housing, and books.
  2. Building a Pediatric Heart Hospital: To directly address the treatment gap, we committed to establishing a specialized heart hospital in India. In 2022, we signed an MOU with the Sanjay Gandhi Post Graduate Institute of Medical Sciences in Lucknow. Facilitated by the Government of Uttar Pradesh, this hospital aims to provide free or subsidized CHD treatment. In February 2024, we brought a team from UCSF Benioff Children’s Hospital to train doctors and nurses in India, an initiative led by Dr. V. Mohan Reddy.

IC: What are future plans for the Saloni Heart Foundation?

Mrinalini Seth: The most ambitious project ahead of us is the construction of a 200-bed pediatric heart hospital in Lucknow, The Saloni Heart Center, in partnership with the Uttar Pradesh government. Initially, our goal was to connect patients with specialists, but my husband, Himangshu, strongly felt we needed to take it further and facilitate providing treatment as well. Thanks to government support, the hospital is now becoming a reality.

We are also grateful for the contributions of Dr. Chitra Gupta, former medical director of the US-India Strategic Partnership Forum (USISPF). She connected us with the Government of India and Niti Aayog. I truly believe Saloni had a purpose on this planet. Her unique personality touched many, and every physician who cared for her has become part of our mission.

Resources for CHD support in the US

For families in need of CHD support and resources in the U.S., the following organizations provide valuable information and assistance:

Nandita Chowdhury Bose is Contributing Editor at India Currents. In Mumbai, she worked at India Today and Society magazines, besides other digital publications. In the United States, she has been a communications...