All parents can relate to this: How far you will go to help your child is just the beginning.
Perhaps no one knows this better than Sagar, a father from India whose efforts to save his son spanned the world and eventually led him to Boston Children’s Hospital.
Sagar’s son, Priyanshu, was diagnosed with a double right ventricle (DORV) with hypoplastic (small) ventricle, a rare congenital disorder in which the two main arteries of the heart are both connected to the right ventricle, a few months after he was born in 2014, leading to A poor oxygen supply causes blood to circulate around the body. The condition can cause severe lung damage. An initial operation was not beneficial, but it did have the potential to extend Priyanshu’s life by a few years.
After initially resigning himself to estimating the time he had left with his son, Sagar decided he had to do more.
Several hospitals in India declined further treatment for Priyanshu due to the severity of his heart and lung disease (pulmonary hypertension), but Sagar continued to seek the care his son needed to survive.
“I promised my son I would do something, so I tried,” Sagar says.
A new world
Sagar bought a Hindi-English dictionary and after work went to cyber cafes to learn how to use a computer, navigate the Internet, and send email. What followed was an international token of support that spanned over three years and a global pandemic that eventually brought him and his family more than 7,000 miles from their home in Bhopal to Boston Children’s.
Sagar didn’t listen when the doctors told him that Priyanshu could not have any further operations.
“I’ve decided that I need to start over. If not in India, I would have my son treated elsewhere in the world.“
“In this email I found my son’s life”
While investigating Priyanshu’s condition, Sagar found videos of Dr. Sitaram Emani, cardiac surgeon and director of the Complex Biventricular Repair Program at Boston Children’s Benderson Family Heart Center. The videos gave him hope that his son might get the treatment he needed at Boston Children’s, so he contacted the team and looked forward to a response saying that Dr. Emani reviewed Priyanshu’s case and found him a candidate for complex biventricular repair.
Each year, more than 2,500 families outside of the United States seek care at Boston Children’s. The Global Services team – a group of medical and administrative professionals – exists to help these families through the process. Her mission is to coordinate care between families, the health care professionals in their home countries, and the providers here at Boston Children’s.
“It was one of the most beautiful days of my life,” says Sagar of receiving the message.
After seeing firsthand the ways the online world could save his son, Sagar turned to the internet again to raise funds for travel and treatment in Boston.
Within a few weeks his #savepriyanshu campaign went viral and caught the attention of the national media as well as the Good Samaritans around the world.
Another new beginning
In March, the family arrived at Boston Children’s thanks to the generosity of those gathered in #savepriyanshu from around the world – including a philanthropist named Caroline and Gaurav, a child health advocate. Both devoted their lives to helping children in need, working with Boston Children’s Global Services team to bring Priyanshu to Boston, and both traveled to Boston to be by Priyanshu’s side.
Sagar says he will forever be grateful to those who brought Priyanshu to Boston Children’s and to those here who helped save his life.
Sagar and his family also appreciate the unconditional respect, compassion, and support they have found at Boston Children’s.
“We found so much love for Priyanshu,” he says. “Today my son stands before you because of this hospital. I have no words to express how grateful I am … you gave my son new life. “
Hear Sagar tell his story of his unwavering faith and determination to save his son.
Learn more about the Benderson Family Heart Center at Boston Children’s Hospital or make an appointment for a second opinion on your child’s heart diagnosis.