Getting to Know Healing Little Hearts
Tue, 3/16 8:56AM • 28:44
SUMMARY KEYWORDS
children, congenital heart disease, India, hospitals, countries, people, Africa, surgery, hearts, congenital heart defect, training, donations, doctors, heart, world, operate, healing
Dr. Sanjiv Nichani, OBE 00:00
I think it's fair to say that not more than 5% of children needing heart surgery every year get heart surgery. In other words 95% of children born with a congenital heart defect in Africa are tragically and sadly born with the death sentence.
Anna Jaworski 00:26
Welcome to "Heart to Heart with Anna." I am Anna Jaworski, and the host of your program. I'm also a Heart Mom. At the time of this recording, my Heart Warrior is 26 years old. He's a pharmacy tech at our local hospital and he is my inspiration. It's because of Alexander that I founded Hearts Unite the Globe, the nonprofit organization that supports this podcast. I am very excited for today's show to feature a special advocate. Today's show is entitled "Getting to Know Healing Little Hearts with Sanjiv Nichani. Dr. Sanjiv Nichani is a consultant pediatrician and the current director of the children's intensive care unit for University Hospitals of Leicester in the United Kingdom. For over 30 years, Dr. Nichani has specialized in looking after critically ill babies, children, and teenagers following open-heart surgery. In 2009, he founded the charity Healing Little Hearts. Their goal is to ensure that every child has access to the heart surgery they need and deserve. They send volunteer teams to treat the poorest of children who come from families that do not have the resources to pay for their health care. The charity also builds the capacity of surgeons in these countries to help ensure ongoing care. Since 2009, Healing Little Hearts has undertaken 151 international missions to 12 countries and operated on over 2000 children. Dr. Nichani is joining us today to talk about the huge unmet need of congenital heart disease and capacity building in the developing world. Welcome to "Heart to Heart with Anna," Dr. Nichani.
Dr. Sanjiv Nichani, OBE 02:06
Thank you very much, Anna, good to talk to you.
Anna Jaworski 02:08
Can we start by having you tell us why you became involved in working with the congenital heart defect community?
Dr. Sanjiv Nichani, OBE 02:14
I'm British Indian. And I spent the first couple of decades in my life in India where I became a doctor and also did my early training. And what I observed, tragically, was that many, many children who presented with congenital heart disease died because the doctors had absolutely no idea and no training as to how to treat them. They were not able to operate on them and even the few cases that they did operate on, they had no idea as to how to look after them after surgery.
Anna Jaworski 02:49
Are you talking about even something as simple as a small hole in the heart?
Dr. Sanjiv Nichani, OBE 02:54
Yes. So maybe in an older child with an ASD, they would manage to operate on the child. And because the post operative care was not complicated, things would be okay. However, anything slightly more complex, like a Fallot's tetrology, or indeed a child with a VSD who is much smaller - a newborn baby or three- or six-month old, a) they couldn't operate upon them and b) even if they did, after surgery, the doctors in the ICU had absolutely no idea what to do (in India).
Anna Jaworski 03:26
Wow. Wow.
Dr. Sanjiv Nichani, OBE 03:29
That made me decide and resolve that I wanted to get training in this specialty. And I left India to come to the UK to get training in exactly that. The care of critically ill children after cardiac surgery.
Anna Jaworski 03:43
So you became a pediatric cardiologist?
Dr. Sanjiv Nichani, OBE 03:46
I became a pediatric intensivist
Anna Jaworski 03:48
And you specialize in working with children after they have had open-heart surgery?
Dr. Sanjiv Nichani, OBE 03:52
That's correct? Yes.
Anna Jaworski 03:54
When did you start Healing Little Hearts?
Dr. Sanjiv Nichani, OBE 03:57
I started Healing Little Hearts in 2009. I had been a consultant or as the Americans would say, an attending for about 10 or 12 years and I was thinking about my legacy and giving something back. And it was very easy for me to decide and to determine what to do. And that is to found Healing Little Hearts so we could send volunteer teams of doctors and nurses initially to India to train local doctors and nurses in the art and the science of treating children with congenital heart disease.
Anna Jaworski 04:33
That's so admirable. What's interesting is later on in the season, we're going to have another guest whose sole mission is to provide care to children in India, and he's working with 26 different hospitals to try to provide care to children in India. How is your organization working with the different hospitals? The gentleman who's coming on my program later actually talked to me about how there are some regions of India that don't even have hospitals that know how to treat these children at all.
Dr. Sanjiv Nichani, OBE 05:06
That's absolutely right. Since I started in 2009, the landscape has changed considerably in India. So what that means is that the larger cities, Bombay, Delhi, Chennai, Bangalore excetera, have some or a decent amount of provision for pediatric cardiac surgery. However, if you live in a smaller city, or indeed in a town, then there's virtually no access to treatment, to operative treatment for a congenital heart defect. And that is my big focus at the moment. I started off in Bombay. But now Bombay has five or six very good centers, some of which are world class, so I don't go to Bombay anymore. I branched out to the smaller cities where there are hospitals who want to learn how to do this and who wants to build capacity. That's a big focus of mine as well.
Anna Jaworski 06:06
Wow, that sounds like quite a task, because from what I've learned from some of the other people from India, who had been on my program, there is socialized medicine in India, but that doesn't mean that all of the children in India are getting the care that they need.
Dr. Sanjiv Nichani, OBE 06:21
Absolutely right. I think about a quarter of the 80,000 children born every year needing congenital heart surgery are getting operated upon. And that number is going up steadily. Having said that, if you compare the statistics in India, to those of Africa, India is actually much better off relatively because in Africa, I think it's fair to say that not more than 5% of children needing heart surgery every year get heart surgery. In other words, 95% of children born with a congenital heart defect in Africa, are tragically and sadly born with a death sentence.
Anna Jaworski 07:03
Yes, yes, I've actually spoken to some other people in Africa and that is exactly what they have said as well. There are no hospitals there that are really able to care for children, especially children with critical congenital heart defects.
Dr. Sanjiv Nichani, OBE 07:20
Indeed, I think in Africa, the only country which is relatively well-provided for is South Africa, but large swathes of the continent, there's nothing tragically, sadly, nothing.
Anna Jaworski 07:34
So is Healing Little Hearts now, dedicating itself to go into Africa to start training doctors in Africa how to care for these children?
Dr. Sanjiv Nichani, OBE 07:43
Indeed, we have been to about six African countries, and I'm always looking to partner with hospitals and doctors and nurses in Africa. Having started off in India, where I'm originally from, and having established the model, I decided that Africa is actually the continent with the greatest needs. And that's where I would like to focus my efforts.
HomeTonightForever 08:12
Home. Tonight. Forever by the Baby Blues 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.
Disclaimer 08:48
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.
Rejoiner 09:10
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 Anna@hearttoheartwithanna.com. That's Anna@hearttoheartwithAnna.com. Now, back to "Heart to Heart with Anna."
Anna Jaworski 09:30
Dr. Nichani before the break, you were telling us about Healing Little Hearts and how you have started to really focus on helping people in Africa. Now I want to get into a little bit more detail about the organization. On the website, https://healinglittlehearts.org, it states that your organization is working in 12 countries in three continents. You already started to tell us a little bit about how you started in India but can you tell us a little bit more about the history over the last 11 years? We know you started in India and Africa, but you say "three continents" so I'm curious where else you have gone?
Dr. Sanjiv Nichani, OBE 10:10
I started Healing Little Hearts, in Bombay out of loyalty, I suppose. And in the first two or three years, I went to one particular partner hospital three or four times each year. We would go for a week at a time and operate on 12 to 15 children on average. And after three years, I took stock and having had a fair amount of success under my belt, I thought it was time to branch out and then started exploring going to different hospitals in India itself in different cities. That was the next iteration of a Healing Little Hearts and then people started taking notice of our work. And we started getting requests for cooperation and collaboration from people all over the world. And then we started flying to different countries beginning with Malaysia. And then we went to Pakistan, Bangladesh, we went to Africa, where we've been to Kenya, Tanzania, Nigeria, Cameroon, we've been to Mauritius, we've been to Bangladesh and Palestine. And we've also been to two relatively poor countries in Europe - Romania, and Latvia. And that's where the three continents come from.
Anna Jaworski 11:35
Wow. Dr. William Novick has been on my program, and he's actually part of my Medical Advisory Board now. And he does something very similar. He even brings nurses, techs, all the different people that are needed to perform the surgeries and then like you, they actually train people at the hospitals there. Is that what you do too, you assemble an entire team and bring them with you? And do you also bring materials?
Dr. Sanjiv Nichani, OBE 12:03
Yeah, absolutely, so William Novick is very, very prolific. He's a leader in this field. Although I don't know him personally, I have a huge amount of respect for the work that he does. Similar to him, we take an entire cardiac team starting with surgeon, in certain instances, an assistant, a perfusionist, an anesthetist, a cardiologist, and intensive care team of about six people. So in total, we have a team of around 10, sometimes 12. We don't take any big materials. But we can take certain consumables and certain things like patches, BT shunts, but we don't take circuits or bypass machines, or things like that.
Anna Jaworski 12:51
So you have to go to a country that already has a certain level of technology.
Dr. Sanjiv Nichani, OBE 12:55
Absolutely. Because compared to William Novick's Foundation, we are a relatively smaller charity. We don't have access to the same support and the same fund. Our main focus is to empower and to train, and we take consumables and items that can basically fit in suitcases.
Anna Jaworski 13:17
But it still sounds like what you're providing - this is lifesaving for the people of those countries. The children would perish if they didn't, have somebody like you there with your team to help them.
Dr. Sanjiv Nichani, OBE 13:30
Yeah, indeed, that is our aim. And our other big aim is to partner with hospitals have that have the basic infrastructure and the ambition so that we go there three or four times each year for a period of about five years. So by the end of that tenure with them, they are self-sufficient in the simpler cardiac surgeries like ASDs, VSDs, Fallots, complete VSDs. And then we go there periodically to work with them on the more complex operation. So we build them up slowly starting off with the simplest operations, and then work with them through the most complex surgeries.
Anna Jaworski 14:10
Yeah, that's exactly what Dr. Novick is doing as well. It seems like you all have a similar model. And it seems to be working because I feel that we're definitely seeing an improvement in the number of children who are surviving even to adulthood, which is really pretty amazing. Dr. Novick had also said something about providing communication via Zoom or other long distance technologies. Are you able to do that too, so if they have questions they can call you or call a sister or brother hospital?
Dr. Sanjiv Nichani, OBE 14:41
We support our partner hospitals and the local teams with the use of technology, WhatsApp, Zoom, etcetera. They can send us pictures and videos of the patient echoes or patient and we advise them as to what to do. We do our best to extubate as many children as possible whilst we are there, but inevitably there will be two or three children left on ventilators because they're not ready to come off yet. So we support them from a distance using the technology available.
Anna Jaworski 15:15
That's just amazing to me that you have the ability to do that, to see the echos, to have access to the kind of technology that you need - that even possibly in a different country, you can communicate with them and help them. I mean, that's just fascinating.
Dr. Sanjiv Nichani, OBE 15:31
Thanks to the huge progression in technology, we are fortunately able to support our partner hospitals and the local team. So they know once we have left, we haven't abandoned them, and that we are there for these patients.
Anna Jaworski 15:47
Yeah, yeah. I just think that's fabulous. Do you have one center in your area that is more advanced than the others? And does that one become like a model hospital for the other hospitals in the other cities nearby?
Dr. Sanjiv Nichani, OBE 16:03
That is certainly our aim. However, we haven't quite reached that stage yet. What we have done is that we have signed off two hospitals in India as pretty much self-sufficient - one in a city called Cooney and one in a city called Vijaywada. So we've trained the local team from scratch, and they are now operating on five or 600 children per year themselves.
Anna Jaworski 16:34
Wow.
Dr. Sanjiv Nichani, OBE 16:35
That's very satisfying.
Anna Jaworski 16:37
I'm sure it is. That's amazing.
Baby Hearts Press 16:42
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 our website www.babyheartspress.com. Our 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.
HUG Information 17:16
"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 nonprofit 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.
Anna Jaworski 17:59
Dr. Nichani, before the break, you were telling us about how you're training the people in hospitals and how now you even have two hospitals that are completely self-sufficient. That's just fabulous. Most of my listeners are from the United States, and I don't really think they're aware of how bad the situation can be for children around the world. Can you enlighten my listeners about some of the circumstances that you've encountered?
Dr. Sanjiv Nichani, OBE 18:27
Yeah, absolutely. I think the best way to illustrate the scale of a problem is with the help of statistics. And if you look at the world map every year, there are 1.4 million children born with congenital heart disease. Out of that 1 million children are born in the poorest countries of the world. And 90% of these children born in the poorest countries of the world, will never ever get access to heart treatment or heart surgery. Because 90% of the specialists who are able to deal with this live in the developed world, that therefore means that there is a gross mismatch between needs, and the ability to treat the need. And tragically, that leads to a million deaths every year, a million childhood deaths every year from untreated, congenital and acquired heart disease such as rheumatic heart disease. This is in my opinion, a global public health scandal affecting children, which very, very few people know about.
Anna Jaworski 19:45
Yeah, in fact, Bistra Zhevela has been on my program and she works with an organization called Global ARCH. So there are some people who realize how dire the situation is, but I don't think we can repeat it often enough,
Dr. Sanjiv Nichani, OBE 20:01
Everybody knows about deaths from malaria and across the world 400,000 people die from malaria according to the World Health Organization. That therefore means that two and a half times the number of children die from untreated heart disease across the world each and every year. That's a massive number of children dying in the 21st century, and is usually tragic.
Anna Jaworski 20:28
Absolutely, especially since we do have the technology needed to save, maybe not all of those children, but definitely a much bigger percentage. And I am so impressed that your organization is doing its part not only to go into countries and save those children's lives, but to provide the training for the doctors to see to those babies and young children afterwards. So they can leave a full and productive life.
Dr. Sanjiv Nichani, OBE 20:56
Training is key in this endeavor, training and empowerment are key to build capacity. So that in the fullness of time, these hospitals that we work with, are able to provide pediatric cardiac surgery themselves. It's not tenable for countries in Africa to send children to other countries for surgery. That is putting plaster on a very, very, very large problem on a very large wound. So therefore, the best way of dealing with a problem is planning an empowerment locally in each of the countries where there's such a deficiency of congenital cardiac care.
Anna Jaworski 21:39
I couldn't agree with you more. I think this is something that - you're right, you can't just put a bandaid on it. But for decades, that's exactly what has been happening - is only the very richest people in those countries have been able to seek help for their children by flying them to another country and that doesn't help the majority of the people who live in that country. It's only by training the doctors right there in those countries, but not just the doctors, like you were saying the perfusionists, the anesthesiologists, and very importantly, the nurses who take care of the children and help them to recovery. That's a lot of different kinds of people who need to be trained.
Dr. Sanjiv Nichani, OBE 22:21
Absolutely. It's everybody in the team, every facet of the care of a child with congenital heart disease must be factored in, when you undertake training and empowerment, literally, from pre-op assessment, to the surgery to the post-op care, the nurses, as you say, Anna, are absolutely key to the success or failure of this endeavor.
Anna Jaworski 22:48
Absolutely. And are you also having the nurses train the parents on how to take care of the children once they're back home? Or do you have somebody there who's a parent educator?
Dr. Sanjiv Nichani, OBE 22:59
That's a very good idea, which we haven't focused on much so far. We'll leave that to the local teams but I think it's something we should start thinking about. So thank you for that.
Anna Jaworski 23:11
My son is 26 and that is something that I have seen happening here in the United States. Twenty-six years ago, there really wasn't much in the way of parent education. And a lot of parents would even go home not knowing the name of their child's heart defect or not understanding the surgeries that they had. But I'd like to say that that has changed dramatically. And now parents are much better educated. But I think it starts with saving the lives of the children. And I think there's a natural progression. But I'm happy to think that's something that your organization might start to work on. How can people help you with your organization? I have a feeling this information is going to inspire people to want to help you.
Dr. Sanjiv Nichani, OBE 23:54
I think raising the awareness of what we do what William Novak does and this massive problem of untreated heart disease across the developing world should be brought into the public conscience. So anything that your listeners can do to help that would be massively important in all of us achieving our goals. Your podcast, raising the awareness is massively important because when people hear these statistics, they are completely and utterly shocked.
Anna Jaworski 24:29
Yeah
Dr. Sanjiv Nichani, OBE 24:29
When they hear that there are a million children dying from untreated heart disease in the 21st century. At the same time, when we are thinking of sending a manned mission to Mars. You're really not getting basic health care,
Anna Jaworski 24:44
I know! I know. It's just amazing to me, that we can have science at such different levels at the same time in history. We can have this science where children are just sent home to die, maybe not even diagnosed with having a heart defect until after the fact, maybe not at all - the children just pass away all the way to, like you said, considering a manned mission to Mars, it just is mind blowing. So yes, okay, I think you're absolutely right. Let's put a huge spotlight on it. But what else can we do as far as helping your organization?
Dr. Sanjiv Nichani, OBE 25:21
Well, organizations like mine depend on public donations to keep going. And our unique selling point is that 96 pence or every pound or let's translate into dollars 96 cents of every dollar is spent on providing this life saving heart treatments. Nobody gets any renumeration, everybody works pro bono, we all take our annual leave, go during our holidays to provide this life saving treatment. So donations are what will help us to keep going in the long-term because this problem will be solved, but it's going to take decades and that's what we need the support for.
Anna Jaworski 26:05
Yes, I think that's wonderful. Can you tell our listeners - and this will be in the show notes, my friends so if you're on your exercise bike right now, you don't have to stop what you're doing, keep exercising - just go to the show notes. And that's where the description of this show is. But I'm going to give Dr. Nichani a chance to say the URL where the donations can be made. And can they use PayPal? Or is it credit cards?
Dr. Sanjiv Nichani, OBE 26:29
Yeah, they can use www.healinglittlehearts.org or PayPal or Facebook, there are numerous platforms where we will very gratefully accept any help that is given.
Anna Jaworski 26:41
And didn't you just recently get a commendation from the Queen for the work that you have been doing?
Dr. Sanjiv Nichani, OBE 26:48
Yes, thank you for bringing that up - one of the highlights of my life. I was honored by the Queen for my work for medicine and charity with what's called an OBE the Order of the British Empire, which is an amazing honor that I've been given.
Anna Jaworski 27:07
Well that is how I found out about you and I'm so glad I did. Thank you so much for coming on the program today. This has just been amazing.
Dr. Sanjiv Nichani, OBE 27:17
Thank you very much. It's my pleasure. And thank you for inviting me and it's it's a pleasure talking to you.
Anna Jaworski 27:23
Well, this has been wonderful. I hope to have you come back on the program sometime in the future where you can tell us how things are progressing with your nonprofit organization. I think this is something where we need to be united in the globe. Friends check out Global ARCH. That's another way that you can get involved in looking at congenital heart disease in a global perspective how all of us can hold hands together as we try and help children all over the world so that we don't have these needless deaths. Thanks again Dr. Nichani. Friends, if you've enjoyed this episode, please consider becoming a patron of our program you can learn more at www.patreon.com/hearttoheart. We appreciate each and every contributor even a small donation can make a big difference. Have a great week and remember my friends, you are not alone.
Conclusion 28:18
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.
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