Heart to Heart with Anna

Sameer’s Legacy: The Genesis Foundation - Helping Children with Heart Defects in India

March 02, 2021 Jyoti Sagar Season 16 Episode 297
Heart to Heart with Anna
Sameer’s Legacy: The Genesis Foundation - Helping Children with Heart Defects in India
Show Notes Transcript

How can a couple survive the loss of their precious son? What can be done when an entire country seems to be neglecting the needs of its most vulnerable residents? How can people make a difference in their community?

Today's Guest, Jyoti Sagar, answers those questions and so much more!

Jyoti Sagar and his wife Prema lost their son Sameer, who was born on December 20, 1983, to a congenital heart defect over 30 years ago.  Devastated by the loss of their son, after some time they began working at Missionaries of Charity. It gave them a whole new meaning to life, and this is how their journey started as they felt they could reach out and assist in the best way possible - enriching the lives of others and their own.

Since then, they have dedicated their lives and professions to saving the lives of critically ill children in India through their non-government organization (NGO) – Genesis Foundation. The main aim of the Foundation is to offer support to children with CHD from families where the monthly income does not exceed $198. They strongly believe that every life should be given a chance and that no child should die due to poverty.

Links mentioned in this podcast:

Genesis Foundation
Kasauli Rhythm and Blues Festival (Genesis Foundation)
Missionaries of Charity

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Samir’s Legacy: The Genesis Foundation - Helping Children with Heart Defects in India

[00:00:00] Jyoti Sagar: Death of a child is not in the natural order of things. And for us, for Prema and me, there was perhaps a message in the loss of Samir. And we wondered if it was his karma, as we Hindus think, or ours? Did we really deserve this? Or was all this to give us the realization of loss and grief and start a journey where we could be a source of help, power to others similarly placed?.

[00:00:38] Anna Jaworski: Welcome to "Heart to Heart with Anna." I am Anna Jaworski  and your host. I'm also a heart mom. My son Alexander was born with a complex congenital heart defect and has had three open-heart surgeries. He is the reason I am the host of this program. I'm very excited about today's show to feature a special heart dad. Today's show is entitled 'Samir's Legacy:

[00:01:02] The Genesis Foundation - Helping Children with Heart Defects in India. Jyoti Sagar  and his wife Prema lost their son Samir, who was born on December 20th, 1983 to a congenital heart defect over 30 years ago. Devastated by the loss of their son, after some time, they began working at Missionaries of Charity. It gave them a whole new meaning to life.

[00:01:27] And this is how their journey started as they felt they could reach out and assist in the best way possible - enriching the lives of others and their own. Since then they have dedicated their lives and professions to saving the lives of critically ill children in India, through their non-government organization or NGO Genesis Foundation.

[00:01:47] The main aim of the foundation is to offer support to children with congenital heart defects or CHD from families where the monthly income does not exceed $198. They strongly believe that every life should be given a chance and that no child should die due to poverty. Welcome to "Heart to Heart with Anna," Jyoti Sagar.

[00:02:08] Jyoti Sagar: I'm delighted to be here with you, Anna, 

[00:02:11] Anna Jaworski: $198? That doesn't even seem possible. 

[00:02:16] Jyoti Sagar: $198 roughly converts to 15,000 Indian rupees. So that's a very, very small amount, even in our country. 

[00:02:28] Anna Jaworski: Yeah. There are people that are having to survive on that amount and then have a child with a heart defect. How can they afford medicine or surgeries or even the gas money to drive to the hospitals for their child to receive care?

[00:02:45] Jyoti Sagar: Yes. That is the question, indeed. 

[00:02:48] Anna Jaworski: Okay. Well, we're going to get into that a little bit further into the show, but let's start by talking about your son. What was the name of your son's heart defect? 

[00:02:57] Jyoti Sagar: Let me give you the context Anna. We are talking about 37 years ago and it had been a rather difficult pregnancy for us.

[00:03:07] Prema was confined to bed for almost six months and she had a uterus prolapse. Samir was born in a small boutique clinic at that time run by one of Delhi's leading gynecologists and it was a C-section delivery. And when I look back, it strikes me that we were so poorly informed. We were never told by the clinic that Samir had been born with an APGAR score of just two.

[00:03:38] Anna Jaworski: Oh my goodness! 

[00:03:40] Jyoti Sagar: We figured all this much later, as we learned more about all this. Technically, that places, the baby in acute distress... 

[00:03:48] Anna Jaworski: Sure 

[00:03:49] Jyoti Sagar: ...and he needed immediate intervention. And at that time there were no specialists facilities available in Delhi for diagnosis or treatment of congenital heart defects. Within hours, Samir had turned blue and he was rushed to what was then considered the best neonatal facility in Delhi, but they could not figure out what was wrong, don't forget - there was no line of treatment. Sixteen hours after birth, Samir passed. This is what we were told - convergence leading to cardiorespiratory arrest. That was it.. 

[00:04:28] Anna Jaworski: Yeah 

[00:04:29] Jyoti Sagar: Those were the days we did not have cell phones and instant cameras. We don't even have a photograph of Samir. It all happened. It all happened so suddenly. 

[00:04:41] Anna Jaworski: Wow.

[00:04:42] Jyoti Sagar: The irony was that Prema never got to see Samir.

[00:04:46] She was not in a good condition post the C-section. I had rushed to meet with the neonatal facility and waited as outside the ICU. And then at 2:00 AM in the morning, I was informed that Samir had passed. Now Prema's doctor was very concerned that Prema does not have any trauma until she got somewhat better.

[00:05:13] So we could not break the news to her that we had lost Samir and that was over three to four days. And that was a very difficult moment because, well moments, because I had to completely hide the sorrow and pretend that Samir was at the neonatal facility and slowly getting better. But, you know, being a mother - nature has its own ways. Prima had sensed there was something was amiss, you know? So of course she was devastated by the news. So apart from that very simple thing, which talked about cardiorespiratory arrest, we never really got to know what was the problem apart from the fact that it was a blue baby and passed away because of cardiorespiratory arrest. 

[00:05:59] Anna Jaworski: And maybe they didn't no. It doesn't sound like they actually even had the diagnostic equipment to make a good diagnosis. 

[00:06:08] Jyoti Sagar: Yes. In all probability, that was the case. Yes. 

[00:06:12] Anna Jaworski: So heartbreaking. And that she never even got to hold her baby. 

[00:06:18] Jyoti Sagar: No. 

[00:06:19] Anna Jaworski: Oh my goodness. 

[00:06:21] Well, I'm so touched that this traumatic event made you want to do something to help other families like you.

[00:06:33] I'm so glad we can talk about this today because I'm afraid you're not the only person in your country who has gone through something like this. 

[00:06:41] Jyoti Sagar: Yeah. There are hundreds and thousands of children who are getting born every year and there are several very poor people who cannot afford even life-saving interventions for their children suffering from congenital heart defects.

[00:06:57] And of course for us, Samir's death was a turmoil in our lives. And we went through, as a family, through the classic cycle of anger, you know? Why us? And then eventually you accept and that whole sequence was a very profound experience. And then we found an outlet in our voluntary work at Missionaries of Charity.

[00:07:26] And there, we saw human misery and service to humanity at very close quarters and the trauma and grief of losing a child. It was often a matter of conversation between us. And we often would then talk about poor parents. What happens to them when they can't afford life-saving treatment for their children?

[00:07:50] And we started supporting treatment of a few children at Missionaries of Charity who were suffering from serious medical difficulties. And we raised funds from family and friends, and they were all very informal, small scale. And at that time we also did not have the means or the bandwidth to set up any formal structure to do this.

[00:08:16] And there's also a time that both Prema and I, we were struggling to establish ourselves in our profession, I as a lawyer and she has a public relations consultant. And we had a growing family and all those were also very pressing priorities and commitments for us at that stage. But the thought of setting up eventually some structure through which we could support underprivileged children on a more continuing basis - that never left us. And the important thing to note is that in India, even today, the public health system is very inadequate - largely remains a patient-to-pay system. And the poorest of the poor do not have access to medical facilities, forget about medical insurance.

[00:09:07] So we then decided finally it was only in may of 2001 that we decided that 'Let's start! Let's begin somewhere and even though it might be small.' So we formed the trust - the Genesis Foundation Trust in May of 2001 as a, not-for-profit charity. And then we, you know, took us time to get all formalities done and get a tax-exempt status and so on.

[00:09:36] So that's how we started this. So that's eventually what we, we went through and Samir's loss. So that's the genesis, as we say, of the Genesis Foundation.

[00:09:50] Home.Tonight.Forever.: Home. Tonight. Forever by the Baby Blue Sound Collective. "I think what I love so much about this CD is that some of the songs were inspired by the patients." (Anna Jaworski) "Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, amazon.com, Spotify. (Dr. Gil Wernovsky) "I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects." (Anna Jaworski). "Enjoy the music!" (Dr. Gil Wernovsky)"Home. Tonight. Forever." (Anna Jaworski)

[00:10:30] Disclaimer: This content is not intended to be a substitute for professional, medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

[00:10:51] Heart to Heart with Anna: You are listening to "Heart to Heart with Anna." If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at [email protected] That's [email protected] Now back to "Heart to Heart with Anna" 

[00:11:10] Anna Jaworski: Mr. Sager, before the break, we learned a little bit about how your son Samir was born and passed away due to his congenital heart defect.

[00:11:19] And how that spurred you and your wife to start this NGO Genesis Foundation to help other families like yourself. Can you tell me exactly what your charity does? 

[00:11:30] Jyoti Sagar: Whilst we set up the legal structure, but actually getting the organization up and running, that did take us time. So we continued to operate, I may say again, somewhat informally for the next few years.

[00:11:45] So it was only 2006. That's what? 14 years ago - that we actually had the first full-time employee joined the foundation. And the funds for running the small office and for activities of the foundation were largely from our own personal resources with some support from individual donors. And quite honestly, it was a bit confused and slow start.

[00:12:11] We kind of lauded on learning new things and making connections and reviewing and renewing our mission. Which was a simplistic one: to facilitate life-saving and life-changing medical support to critically-ill children who were from orphanages or from families with that income of less than rupees 5,000 per month.

[00:12:34] And that was USD $100 at that time. 

[00:12:38] Anna Jaworski: Wow. 

[00:12:39] Jyoti Sagar: By 2010, we had started to support children from a variety of different medical conditions. And this was areas such as cancer and heart-and-organ failure and thalassemia and extreme deformities. And we have just overall from 2001 to 2009, you can imagine, we had just supported about 70 children in all of those years.

[00:13:05] And we were largely working with orphanages in the Delhi area. And these included the Missionaries of Charity - that's Mother Teresa's home - and Children of the World, and so on. We had started to establish some early linkages with some of the local hospitals in Delhi, but it was still a small operation. We used to get about five-to-eight requests a month for support.

[00:13:32] And around that time, we also then started some fundraisers initially encouraging corporate chief executive officers and corporate officers to give their time and energy to what we described as Share-a-Smile Events. So we had events such like CEO Chef's Lunch, which was a CEO Cookout, so to say .We had marathons, and art shows. And a Share-a-Smile store for sale of corporate gift items and promotional items on festivals and so on. And by 2012, we had a staff of three people who work full-time and Prema would spend a lot of time at the foundation and I helped out as needed. We also then launched an annual flagship fundraising event for us.

[00:14:21] It's called Kasauli Rhythm and Blues. Kasauli is a resort in the lower Himalayas. And that continues to be an exciting event. And it's now recognized as one of the top 25 music events in India. So, but there was more activity and we had started to support a large number of children. And what was also happening that we, as the trustees, we were ourselves funding, all the overhead costs, staff salaries, operating costs, and successfully raised funds were entirely used a hundred percent for the cause.

[00:14:58] So that was the kind of early days and journey. Yes. 

[00:15:03] Anna Jaworski: That's very, very impressive. And now I know that you've helped nearly 3000 children access medical care. 

[00:15:11] Jyoti Sagar: Yeah. It's actually over 3000. We have a counter. If you see our website, there is a counter on top and tells you, what is the situation as of date?

[00:15:21] Anna Jaworski: That's just amazing and it's such a huge task. So how did you build such an impressive team to help you? I mean, it sounds like you did a really good job of doing outreach to the local hospitals and you went about it slowly to build, it sounds like a very firm foundation, but can you tell us a little bit about how you got to that point over 3,000 children. 

[00:15:46] Jyoti Sagar: So it's been an evolution in a way that, and we started that most seriously from about 2012 onwards. As I said before, we were supporting children. In five areas, which was cancer, heart, organ failure, thalassemia and extreme deformities. But we also were constantly looking at ourselves and what we were trying to do and what impact we were making.

[00:16:13] And it occurred to us that we were perhaps trying to do too many things and we were probably losing focus and that's not making an impact. So we, at that time, narrowed down, we said, "Okay, we will now just focus on heart, cancer and thalassemia. And we gave up the other two things that we were busy with. And we continued to monitor ourselves and still felt that, “Look! We are still not focused enough." And by end of 2016, actually, that was the time when we were absolutely clear what we want to do. And we said, we will have just a single focus and that's hard. And again, it took us back actually to the genesis of the Genesis Foundation. And we then also had come to realize by that time, that this was a hugely underserved area in the country and we could start making some impact.

[00:17:13] So taking that into account - the fact that as I earlier mentioning, if you look at the global averages, there are roughly eight to nine cases, per 1000 life births, and what you're looking at is 25-to-26 million children being born. The number of children being born with congenital heart defects is in the region of over 220,000 a year.

[00:17:38] And about 20-to-25% cases, as you would know, do involve immediate intervention, even for the child to survive. 

[00:17:46] Anna Jaworski: Right 

[00:17:47] Jyoti Sagar: Congenital heart defects is one of the major causes of infant mortality. So we figured that much was to be done in that space. So from January 1, 2017, we have focused exclusively on CHD, congenital heart defects.

[00:18:07] We provide medical assistance to children from poorest to the poor families. Currently we support families with monthly income of a piece 15,000. That's the USD $198 number we discussed. In a way I'm proud and sad to say that we are - with what we do - we are the largest NGO in this space in India. Proud because we are the largest, but sad to say that with the numbers, like 600 and little over 600 children, we do every year, we are the largest and that's a sad thing because that shows how much there is still to be addressed there. 

[00:18:43] Anna Jaworski: There still are so many children who need help that aren't getting anything. 

[00:18:47] Jyoti Sagar: That's right. Now we have a lot more that we are doing. We have grants from corporations under their corporate social responsibility programs.

[00:18:56] We have private foundations, some high-net worth individuals. And between me and Prema, we continue to fund more or less most of the overhead of the organization and the poor of course support as a need basis. Currently, we have seven full-time employees and they form a very well-knit team. And we run this operation when we support surgeries.

[00:19:19] We're in 26 partner hospitals around the country. 

[00:19:24] Anna Jaworski: Wow. That's really impressive. 26 different hospitals! That's providing lots of different transportation and there's a lot of different complexities just dealing with that. 

[00:19:37] Jyoti Sagar: Yeah. Well, I wanted to mention again, is that India is a very large country with a huge population. Unfortunately, the cardiacs of the pediatric cardiology centers are only in the larger cities and in the hinterland, there is literally nothing. So you actually have kids and their parents who come in from the hinterland, they have to come to towns. They have to make arrangements for their stay. And because that's the only place they will find the specialty that they need. So it's quite a task. And several times we have to actually arrange at our own cost, so to say, ambulances, to transport kids from where they lived to the nearest center, where we can help the child with intervention. 

[00:20:22] Anna Jaworski: Wow. Now in the United States, we have Ronald McDonald Houses or Fisher Houses or places that provide low-cost housing for families who have children with cancer or heart defects.

[00:20:35] Is there anything like that in India? 

[00:20:38] Jyoti Sagar: In several places, there are now those sorts of institutions of which provide that. Quite a few of our partner hospitals, they do have facilities for such cases. But quite honestly, actually, if you drive down and go past a large hospital in Delhi or Mumbai or any of our larger cities, you will actually see people.

[00:21:00] It's true. You actually see people camping on the pavements. 

[00:21:05] Anna Jaworski: I'm sorry, you said you'll actually see people camping... 

[00:21:08] Jyoti Sagar: ...on the pavement. 

[00:21:10] Anna Jaworski: Oh my goodness. 

[00:21:11] Jyoti Sagar: Whilst the child is in the hospital inside 

[00:21:14] Baby Hearts Press: Anna Jaworski has written several books to empower the congenital heart defect or CHD community. These books can be found  at Amazon.com or at her website www.BabyHeartsPress.com. Her best seller is "The Heart of a Mother" an - anthology of stories written by women for women in the CHD community. Anna's other books, "My Brother Needs an Operation," "The Heart of a Father," and "Hypoplastic Left Heart Syndrome: A Handbook for Parents" will help you understand that you are not alone. Visit babyheartspress.com to find out more.

[00:21:56] HUG Info: "Heart to Heart with Anna" is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community, to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at www.congenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more. 

[00:22:32] Anna Jaworski: Before the break, Mr. Sagar, we were talking about the condition that so many of the children in your country are having to go through, but the thought of parents having to camp out on the pavement in front of the hospital, because there's no place for them to stay while their children are having surgery...

[00:22:50] Oh my goodness! I cannot even imagine that. Tell me how people can volunteer with your nonprofit, because I'm sure there will be some people who would like. To offer some assistance. 

[00:23:02] Jyoti Sagar: Yeah, there diverse opportunities for volunteering. And one of the key areas is the hospital visits and really handholding of affected families.

[00:23:14] We have found that employees of corporations who support us under their corporate social responsibility programs, for instance, can help a lot by literally a simple thing, like visiting the hospital to meet the children recovering from the surgeries, spending time with them and the parents, and sharing small gifts.

[00:23:37] And really, that, we find for these poorest of the poor people. That simple gesture, that simple gesture which provides hope and support to the families is huge. Now these are poorest of the poor families, typically farmers, daily wage earners, laborers who do menial jobs. These people are not familiar with, and they are simply overwrought by, the hospital environment.

[00:24:06] Anna Jaworski: Of course! They're probably overwhelmed!

[00:24:09] Jyoti Sagar: Spending time with them to share their concerns and giving encouragement and emotional support are such critical contributions that volunteers make. Also one of the things that the foundation does is we coordinate with the hospitals, the partner hospitals, to conduct diagnostic camps in the hinterland, small towns and villages, where we hold these diagnostic camps.

[00:24:36] In a district center, we will have a diagnostic camp where children from surrounding villages and from that district will actually come there to be diagnosed and we require usually a lot of hands for holding those camps. There's a lot of groundwork needed when we conduct those camps and volunteers help and organize managing such camps. Unfortunately this year, because of COVID, we have not been able to do much on the campus since March of this year. But once this phase is over, we would be back with those activities. Then apart from that in our diverse fundraisers, volunteers play a very important role. We don't hire many outside agencies usually to do this. And the volunteers help us in doing that. And then in fundraising events, the walk-a-thons, the marathons or the fundraisers - people help us and volunteer to collect funds for the foundation by participating in these activities.

[00:25:37] Anna Jaworski: It's just amazing to me how this has grown from you losing Samir to you saving countless other children. 

[00:25:47] Jyoti Sagar: Yes, it's been possible. I think we just had three reasons. One of course, that we have become more focused the last few years and the first phase sort of reduce the number of areas we've worked in and then we finally found our true - not as we say, by picking up just one area in which we work. Second, I think one of the important things of course, was that we did start sort of building a small internal team. Uh, with additional colleagues, Sri, you know about him, has had a long association in the field of cardiology and was volunteering with the foundation for long before he came on board full-time and others came on board or repeated last four to five years.

[00:26:28] These include Simran, our daughter, who gave up corporate ambitions to come to the foundation. So she is now Director Operations Manager and coordinates the activities. We have Arti who's Assistant Program Officer. We have an administration officer. We have a person who handles finance, and we have Monisa our latest colleague who manages all of our social media reach out and so on.

[00:26:52] And Dolly who's been part of a team for many years. She handles all our events and she's part of the program implementation, too. But the third thing is that we were able to build a, I would say, great productive coalition and collaboration with the hospitals around the country. And that network gives us the opportunity.

[00:27:13] So we work with 26 hospitals now. Very selective about the hospitals we choose to work with. And we have a very strong threshold criteria for choosing the hospitals. So even the doctors that we work with are not only good doctors, but they have great hearts. So we are very clear about the kind of people or the type of people we'll work with.

[00:27:35] Private sector in India carries most of the burden on this because the public sector does not have the bandwidth to deal with this. So we are very lucky that we build relationships and trust with a number of great doctors, great institutions. We say they have hearts of gold, and that has helped us enormously.

[00:27:55] So I'm happy to say last four years. Oh, we have supported as I speak to you today, 1,926 children with congenital heart defects and on the overall over 3000, the heart cases are above 2,200. So for us, it gives us the results of the focus. 

[00:28:19] Anna Jaworski: Oh, it's so motivating to see that you're saving these children and that they're starting to do well.

[00:28:25] You're developing this amazing network with the hospitals and the doctors and the communities. It's really to be commended. So what's the biggest lesson that you have learned in creating this NGO and working with so many people who have congenital heart defects? 

[00:28:42] Jyoti Sagar: I do get asked this question from time to time.

[00:28:46] And I repeat a story that I heard sometime back, and this was about a small kingdom with a very wise King. And one day the news reaches the King that a Holy man, a Sage was passing through the kingdom. So the King rushes to the place where the Sage had made his camp for the night and the King pleaded the Sage and brought him to his palace.

[00:29:13] And he was duly honored, presented with gifts and so on. And the King then asked the Sage for a blessing. So this great man sat quiet for a few moments and then said, "I blessed that you die first, then your children die. And then your grandchildren die." The King was just completely flabbergasted and he was speechless.

[00:29:37] So he sort of then finally asked, he says, Oh Sage, "Why do you give me this rather ominous blessing? And what is the meaning of it?" So the Sage said, he said, "Okay, this is the most valuable blessing. I'm blessing you, that you do not experience death of a child or a grandchild during your lifetime. Because loss of a child is the worst that can happen to anyone. Death of a child is not in the natural order of things.

[00:30:07] And for us, for Prema and me, there was perhaps a message in the loss of Samir. And we wondered if it was his karma, as we Hindus think, or ours, did we really deserve this or was all this to give us the realization of loss and grief? And start a journey where we could be a source of help, power to others similarly placed. So loss of Samir set in motion a chain of events and thoughts. Some of them were very conscious for most and some were just under beneath, which ultimately culminated in the formulation formation Genesis Foundation. Our message simply is we think we are just the instruments. We are the medium through which we are called upon to do whatever we are doing. And this is all ordained by a higher power. Perhaps there is truth when humanitarian and philanthropic activities are described as God's work. And that's how we take it. We are just the tools. We are just the medium. There's somebody who's directing us to do all this. 

[00:31:21] Anna Jaworski: I love that. And I feel like Samir's a little angel on your shoulders and he's there doing that directing for you.

[00:31:30] Jyoti Sagar: Yeah. So it seems, 

[00:31:33] Anna Jaworski: Wow. What an amazing. Experience, you've had, an amazing journey, and I just love how you've turned your grief into a vehicle to help others so they don't experience the same grief that you have. Thank you so much for coming on my program today and for talking to us about your life's mission.

[00:31:51] Jyoti Sagar: Anna, I thank you for having me on the show. I appreciate it very much. Thank you. 

[00:31:57] Anna Jaworski: Well, it has definitely been my pleasure. That's all for today. If you enjoyed this episode of "Heart to Heart with Anna", please take a moment and leave a review on whatever platform you use to listen to our show and remember my friends, you are not alone.

[00:32:14] Conclusion: Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. "Heart to Heart with Anna" with your host Anna Jaworski can be heard every Tuesday at 12 noon Eastern time.