Heart to Heart with Anna

Mom to an Adult Heart Warrior in India

January 19, 2021 Sajani Nair Season 16 Episode 290
Heart to Heart with Anna
Mom to an Adult Heart Warrior in India
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Show Notes Transcript

What is the situation like for people with congenital heart defects in India? What happens to our Heart Warriors as they grow up? What does the Heart Community need to do in order to have a sense of justice for those born with broken hearts?

Sajani Nair lives in Calicut, India, and is the mother of Yadhu Krishna, a young man living with congenitally corrected transposition of the great arteries (CCTGA). Since he was diagnosed, Sajani and her family faced an uphill battle for her son as they struggled to find care. At three and a half years of age, he had a pulmonary artery banding procedure at Narayana Health in Bangalore. He currently needs the arterial switch procedure. Obtaining medical care is difficult in India, as there is no insurance for congenital conditions, forcing families to rely on private hospitals. To help other families affected by CHD, Sajani started a support group in India and a letter-writing campaign to urge the health minister in the central government to address CHD. Her efforts have attracted the attention of doctors and others, who are now working together to support her cause, a life of dignity for people born with CHD.

Facebook Link to Justice for Children with Congenital Heart Defects

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Sajani Nair:

I feel like I can stand and shout and say that,"Come on! I'm here. I'm a Heart Mom! I need to be heard!"

Anna Jaworski:

Welcome to "Heart to Heart with Anna." I am Anna Jaworski and your host. I'm also the mother of a son with a complex congenital heart defct. My son was born in 1994 and has had three open-heart surgeries. It is because of Alexander that I am the advocate for the CHD community that I am. We are so happy that you're here with us today. Today's program is entitled 'Mom to an Adult Heart Warrior in India.' Sajani Nair lives in Calicut, India and is the mother of Yadhu Krishna, a young man living with congenitally corrected transposition of the great arteries or CTGA. Since he was diagnosed, Sajani and her family faced an uphill battle for her son is as they struggled to find care. At three-and-a-half years of age, he had a pulmonary banding procedure. He currently needs the arterial switch procedure. Obtaining medical care is difficult in India as there is no insurance for congenital conditions, forcing families to rely on private hospitals. To help other families affected by congenital heart defects, Sajani started a support group in India and a letter-writing campaign to urge the Health Minister in the Central Government to address CHDs or congenital heart defects. Her efforts have attracted the attention of doctors and others who are now working together to support her cause - a life of dignity for people born with CHD. Welcome to"Heart to Heart with Anna," Sajani!

Sajani Nair:

Thank you so much for having me on the show. It's an honor to be with you, Anna.

Anna Jaworski:

Well, it is an honor for me to talk with you today and to learn some more about what it's like to live in India and have a child with a congenital heart defect. Can you tell us where your son had his procedures done?

Sajani Nair:

Yeah, sure, Anna. My son is an adult now but he was born with a heart defect. He was diagnosed with a CHD almo t immediately after his birth. T e maternity home where I w s admitted for delivery had a pediatric care unit. He was bo n through Caesarean section a d was transferred to the pediatr c care unit. They informed y family that the child seems o have some cardiac issues. Th y suggested my baby be taken to a hospital that specializes n pediatric cardiology. We to k him to a speciality hospital a d we were told he had CTG corrected transposition of gre t arteries. That's what they sa d it was. And from that poin, life had never been the same f r us. We had consulted doctors a d different hospitals hoping o find a permanent and reliab e solution to his conditions. e had taken him to almost eve y major hospital in South Ind a until we decided to get his A banding done at Naraya a Hridayalaya, Bangalore. He w s just three-and-half years t that tim

Anna Jaworski:

It's amazing that he survived till three-and-a half years of age before he had that first surgery. He must have had a VSD or an ASD, some kind of hole in his heart. Right?

Sajani Nair:

Yeah, he really had. He still has a VSD, it's not too big. They say it is small. And they say that when the switch is performed, which is in waiting for, they might tr to close it as well, because i would be a corrective surger and everything would be done th right way this time. That i what the doctors say

Anna Jaworski:

What year was your son born?

Sajani Nair:

2000. March 8, 2000.

Anna Jaworski:

He is a very young adult, he is not very old at all.

Sajani Nair:

Yeah, he is . And that is one of the major issues that we face in India, because pediatric cardiology has been good ever since 2006, I guess. It has gained pace right from that particular year. But the problem is still now not much of a research is done in adults, that is young adult cardiology because there are lots of doctors for the adults as such, but for the young adults, not much is done. So these are children when they hit the 19 or 20, 21. What happens is they don't get that much of care because they neither fall into the pediatric cardiology category, nor are they considered for the adult correction procedures. It's very difficult for us to come to a conclusion as to where to take our children. And so we continue consulting with the pediatric cardiologists. So this particular field where I really feel there has to be a lot of research and more doctors to be available because not many seem to be taking up this particular section as such,

Anna Jaworski:

Right! It's very, it's like a whole new area.

Sajani Nair:

Exactly. It is.

Anna Jaworski:

Because these kids are surviving to adulthood and just 20 years ago, they didn't. So many perished as infants, so for them to make it to adulthood, we have an exploding population and you're right we don't have the proper number of doctors exploding at he same rate. And it is a real ssue. Just a couple of days go, I did an interview with ethodist Hospital in Houston ll on transition care, because believe it or not, we have som of those same issues here in th United States. This is no something that's uncommon, i fact, it's common all around th world. So it's really good tha we're talking about this. Yo had said that insurance is real issue. How is your so going to be able to pay for procedure if he needs one

Sajani Nair:

The fact is that there is never going to be any insurance coverage for my son or any of the children who are born with any kind of congenital diseases. That is how the insurance system in India runs. I got a real big shock when I tried to get an insurance for my whole family, I was told by the insurance agent that "we are ready to cover you and your mothe; who is almost 65 years old" and my husband would be covered, too. But my son, he was at that time, something like 16. And they said he wouldn't be covered. I was like, 'My mother who is 65 years of age, if she gets the insurance coverage, how is it that my son would be denied this kind of a thing?' And the answer was very clean and clear. They said that "Your son has a pre-condition. And insurance companies don't take such liabilities, they wouldn't cover your child." And I said,"I don't need insurance coverage for my family. If it cannot offer it for my son, who needs it most. I don't need it." What else can I mother do?

Anna Jaworski:

It doesn't make any sense. The people who need it the most are being denied because of a pre-existing condition. We have this same problem all over the world, although there are some places that have national medicine. Here's the strange thing. Even in Canada and Australia and England, where they do have socialized medicine, we find that a lot of times these kids in their late teens and early 20s, they still get lost to follow-up care even when they do have insurance. So insurance is a big issue. No question about it. But I think the bigger issue that we're going to talk about in just a few minutes is that transition care and how can we handle being a mother to a young adult with a congenital heart defect?

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 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.

Rejoiner:

You are listening to"Heart to Heart with Anna." If you have a question or comment that you would like to address 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:

Before the break, Sajani, we were talking about what both of us are experiencing right now and that is being the mother to a young adult with a congenital heart defect. It is hard, isn't it?

Sajani Nair:

It is. It is really hard. Life totally changes. Life totally changes when you have a kid with a problem which keeps on ticking. It's like you are staying with that ticking bomb; anything can happen anytime. And there is no emergency number where you can contact us no help available immediately. And time is a very huge factor. It is really traumatic to be a Heart

Anna Jaworski:

It can be traumatic. I mean, I don't know any heart mom who doesn't have some kind of PTSD of one kind or Mom. another just because it is extremely traumatic to hand your child over to a surgeon. I mean, maybe if you have a kid with a CHD, that's never going to equire surgery because it's That's right. We really don't have a choice. ust a little hole that will lose up on its own. Maybe those eople don't have PTSD. But hose of us who have handed our hild over to a surgeon knowing hat that child might not come ack to us alive or might not ome back to us the way we anded him off. You know, he ight have a stroke, he might ave some complications that ould affect him for the rest of is life. It's traumatic. I on't see how anyone can say t's not traumatic, but through upport, we can handle it and hat choice do we have right, Sajani? We don't really have a choice! We love our children. We're gonna do whatever it takes. We'll be that mama tiger, that mama bear whatever it takes, we're gonna we're going to be there for our kids. Now, I'm curious what is it like in India because here in the United States, they have what's called HIPAA laws and it protects the individual who is receiving care And if that individual doesn' want you to know anything abou their care, then the doctor i not allowed to talk to you abou their care. So that means tha as soon as my son turned 18, h said, "Mom, I don't need you o go to my doctor's appointmen s anymore. I've got this!" nd there was nothing I could do about it. What's it like

Sajani Nair:

India has got so many states and even in those in Ind states, there are regions where medical care never reaches. So what happens is, the mother has to carry the kid all the way from those remote villages and to the metros, the journey, the waiting, then they wouldn't be much educated. So they face lots and lots and lots of problems. So you cannot like put the whole thing under a single umbrella, actually, each state has got a different policy. The central government has a common policy, but when it comes to the state government, when they adopt it, they change certain clauses in it. For example, in Kerala, it is much, much, much better a state for the children because the families are more educated because the women are given lots of importance in Kerala. So when a woman is educated in a family, the whole family becomes elite. They know what to provide for their kids, where to take thei kids, what to do about things. o the medical sector is al o pretty good in comparison o most of the North Indian stat. But the problem is for the hea t patients like the kids, t e congenital heart cases, and a l that is this project I ju t called Hridyam. And under thi, what happens is till the age f 17, all the medical expenses f the children are borne by t e governmen

Anna Jaworski:

Oh, so you're born with a congenital heart defect, then the government takes care of all the operations?

Sajani Nair:

Yeah, all the operations, all the check-ups that you do, all the pre operative tests that is conducted during the follow-ups or routine check-ups and everything is free, that is there. But the problem is that right after 17, suddenly this privilege is taken away. So now what happens is that is the age when the children actually opt for professional courses. And you know, educational sector is so demanding, and your children when they get into college, they need more money. And another sad fact is that in India, the whole group of people are divided into poor, middle class and rich people. That is a very broad kind of a classification. But even in middle class, the economic strata is such that those people who work in the private sector, they earn only that much that will sustain their families. So when there is a CHD kid, the kind of expense that amounts to in lakhs or rupees, it's very difficult for the family to balance the whole thing. How do I manage the education of my child? How do I manage this medical expense? How do I manage the life, the food, the everything,..

Anna Jaworski:

The medications, the extra appointments. What... what if they need a device, like a pacemaker, or something like that? Yeah,

Sajani Nair:

That is what.. so that is where we really need the care and right at 17, when it is taken away, it's very difficult. And no medical insurance and all that becomes really difficult. So basically, in different parts of India, different policies are followed. I'm a member, I'm from Kerala. So till 17, I didn't face any of the problems like this. And there are many empaneled private hospitals that is also under thr Hridyam project. So we can also get medical care. But still, the fact is that the number of doctors available, the number of hospitals available, the ratio of that to the number of children afflicted with this disease, it is too vast a kind of difference. You see, they are not enough. Just like one is to a 100 kind of a thing. Like a doctor for this many patients and a surgical facility for this many patients and children are forced to wait and waiting is one thing that is very harmful. I guess that is very, like deciding a factor. With time things get out of control, then there is nothing that can be done. There are so many cases where doctors say, "You are late," but actually we wouldn't be late. We took them but they made us wait. That also happens in India.

Anna Jaworski:

Right. Right. Well, and that is one of the problems with socialized medicine is that you stand in a queue.

Sajani Nair:

Exactly, exactly.

Anna Jaworski:

It's so heartbreaking to hear this. We have the same problem in the United States though. We have this problem all over the world. Right now we have so many children with congenital heart defects and so many who are becoming adults. There really are not enough doctors. So what can we do about it? Well, you've done something! You've started your own organization. Talk to me about The Justice for Children with Congenital Heart Defects Organization, you've started,

Sajani Nair:

Actually, right from the moment when I knew that my child was different, that I'm not as any other mother, I need to be stronger. I need to be there for my kid. Like I isolated myself from most of the things that people do. I was totally into my child. I couldn't send him to playgrounds, because I was scared. God knows what would happen. And I set so many walls around him. I set so many walls around myself. It took me 20 years to come out of the cocoon and to reach out to people, because somewhere I felt I'm the only one who is going through this pain, this trauma. this depression,

Anna Jaworski:

God bless you. I know exactly how you feel. It's very frightening to feel like you're the only one. So when you were taking your son to his pediatric cardiology appointments, you never saw any other parents. They didn't introduce you to anybody?.

Sajani Nair:

No, it doesn't work that way in our country. What happens is each person comes with their child or they consult. They sit alone, depressed. They don't even look at each other, let alone speak or talk. No communication happens. Like imagine I have taken my son all the 20 years, I don't have a single contact with whom I ever shared what I was going through, or they came to me and said, "Okay, what's the matter?" Nothing like that ever happens over there. And there is no such a system where in such groups would be there that people come sit together and share the experiences. Nothing like that is ever available here.

Anna Jaworski:

Well, we're going to change that, aren't we?

Sajani Nair:

Yeah, exactly.

Anna Jaworski:

Okay, let's find out because I tried to find you on Facebook. And I actually looked on the internet once I knew about you, but I couldn't find anything. So tell me how people can find you.

Sajani Nair:

Yeah, actually, what happened is, as I said, I decided to reach out to people after 20 long years and I was not a very social person. But then I got an account on FB and I joined in all the group which had congenital children or adults. And from there, I got a few contacts, there was one Jonali, then many people I met even doctors were there. That is how we made a group there was a group already I was added to it. And then we decided that we should have a kind of supporting group wherein we could voice our problems. And that was how"Justice for the Heart Warriors" happened. And now we actually are taking inspiration from you, Anna. When you asked me, 'Where do I find you?' I made this page"Justice for Heart Warriors" and it's now available and people can reach out to us. I actually want to use this platform to request all the parents, all the parents of the children because until and unless we don't stand for our children, no one is going to. Please join us in the campaign. This is a simple campaign wherein only letters need to be written and that to the Health Minister and the Prime Minister of India, and we are sure that the media will pick it up. And also there will be some kind of advance. They would at least hear us out. We'll get a platform to speak. I request all the parents, I really want to use this particular platform for that.

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.

Anna Jaworski:

Right before the break, Sajani, you got me all excited! I am so happy to hear that you are out there now. You are fighting for people like Yadhu and yourself and you're working with professionals. Is this only for people in India? Or can people like me, a little Texan, can I join too?

Sajani Nair:

Yeah, actually imagine this problem CHD it is not actually a problem that is associated with a particular country. Any country you take, the problem is the same, like CHD is a universal problem and it demands for a universal solution. So no matter which part of the world a CHD is they need proper medical care, they need post recovery support systems, wherein they are absorbed in as normal individuals, into the society. And so we all need to put our heads and hands and everything possible into it .

Anna Jaworski:

And our heart! I mean, really if we put our hearts into it. We all put our heads and hands into it - we can make a difference in the world. Can't we, Sajani?

Sajani Nair:

Yeah, we can. it's like when we dig small wells everywhere. The chances that some wells might find water. But if we are digging at the same point all of us together there is sure to be water and there is sure to be a solution to this common problem that the whole world is facing. I know I might sound rather funny. But imagine if the whole world had one single institution I would call it the 'Queen Bee Organization Principle.' Imagine if funding from NGOs and Government and from all the sectors which would flow into a single unit and irrespective of which country a child is - their registration for surgery activates the account and funding goes straight into their account. And there is a common database of all the CHDs and the training portal to mold the best pediatric cardiologists and young adult cardiologist specialists, whose services can be made available to any patient, anywhere, anytime. Imagine the resource sharing of personnel and money, wherein the patients need not stand in the queue. They need not wait, they need not request, they need not beg. Money reaches their account, their surgeries, their post-surgery care, gets taken care of from one Queen Bee Institution where all of us - all of us big and small join hands together. Just, like for example UNICEF and all. A single organization supporting the whole world. We can grow to that level, can't we? If we really try for the CHDs, for our children.

Anna Jaworski:

Well, I think it begins with us doing what we're doing right now. And that is talking about it, bringing awareness to people who maybe don't know about it. It always surprises me Sajani. When I talk to people and I say my son was born with a heart defect and they look at me like, I'm crazy. What do you mean, your son was born? Oh, that. heart defects are for old people, old people have heart attacks and heart problems and yet over the 20-plus years that I have now been part of this community, what is equally shocking to me is the people that when I talk about my son, they say, "Oh, yeah, my nephew, my cousin, my neighbor..." all of a sudden, it seems like more and more people are aware that babies are being born with heart defects, and that they're growing up to

become adults. So this is it:

we have to continue that conversation - what you just talked about the Queen bee organization? Oh, my gosh, that's a dream. Wouldn't that be a dream come true? If we could make that happen?

Sajani Nair:

Exactly. Because we are not doing this for us. We are doing it for the whole country. For the whole world.

Anna Jaworski:

Yeah, because who knows which of our Heart Warriors might be the next Einstein, might be the next... I don't know, Prime Minister! None of us knows what talents or gifts our children have to bring to the world. But they won't have a chance to do that if they die young. And we want to prevent that. I just love this. Okay, I imagine that letter writing campaign is for Indians and not for people all around the world, we'll put a link in the show notes. And for those of you who don't know what show notes are, it's a description. So there will be a link. So if you're riding your bike while you're listening to this, or if you're driving your car, please don't try and write while you're driving. Because that would really upset me if you had an accident. Don't worry! When you get someplace safe, you can just click on the link, and that will take you exactly where you need to go. So is there a particular website? Or is there just an address on your Facebook page about this letter-writing campaign?

Sajani Nair:

Yeah, actually,"Justice for Heart Warriors" that is the name of our Facebook page. And we were planning on this letter-writing campaign. And you will be thinking, 'Why a letter?' I guess letter is something that is the most personal and the strongest of all things that can appeal to a person because it's not mechanical. It is human emerging out of deep emotions, and hence very strong. When people write, they put in their emotions, and when it reaches a person, the emotions get carried over and it has an influence. So we thought that all the Heart Moms, like our organization... or you could say the support group consists of around 25 to 30 heart moms, just them... but we thought,'Okay, let us try to get more contacts. Let us get more people to write letters.' And imagine if 1000s of letters are flocking to the ministry. Won't they feel like checking what is happening here? And if I sent a mail, it might not have that effect, nobody would notice. But when letters through post offices in the old traditional way, long forgotten ways, when they go, they are sure to stir up something, something within. So that is the reason why we thought of writing letters. And actually, I would like to add that I really need your help, I need your volunteers to support because imagine, just as I said, the whole world is a single family. We believe in Vasudeva kodambakkam, which means that the whole universe, the whole world is a single family. So imagine if for India, all the persons from all over the world write letters to the PM's office saying that, 'Okay, the heart warriors, they need your attention, they need your care, they need your involvement in their affairs as well.' They are also there, imagine if such letters flock there. Won't they have to take some action towards it? So that is the reason. And I really need more volunteers, more people, and you can support us by joining us on an FB page. please do join.

Anna Jaworski:

Okay Facebook"Justice for Heart Warriors." The link will be in the show notes. This is something that all of us can do. And it doesn't have to be a long letter. It really doesn't. It can be something short, and I will definitely do that. I love to write anyway. And I would be happy to write something and just throw my support behind your Prime Minister paying attention to children with heart defects, seeing if there are some laws that can be modified so that these children, when they become 17, don't get lost to follow-up care. We need to support our young adults. We need for these people to continue to get the care that they need because they're citizens! The're contributors to this country and we love them.

Sajani Nair:

Yeah. And the sad plight - there are so many policies in India which covers all the poor people. Poor people means really poor people who cannot actually meet the basic ends - like very poor. They wouldn't be even having a proper house. Nothing at all. But what happens is these people are so uneducated that they are not aware of the plans. They don't get access to it. The rich people don't need any and the middle class who are the major tax payers in India, all the tax money goes into the construction of everything of the roads, of the hospitals, everything but we cannot apply for medical insurance. We are not entitled to any of the free services or subsidized services. Isn't it painful? Isn't it? injustice?

Anna Jaworski:

Yeah. You know what, we can shed some light on that. If every person would take a few moments, and maybe we can even put a sample letter because I know one problem volunteers have sometimes is they don't know where to start. So maybe if we can give them a sample letter, and then they can just personalize it themselves. We'll have to have the address that they can send it to, and maybe we should shoot for a certain day like Congenital Heart Defect Awareness Day, February 14th

Sajani Nair:

Exactly. (chuckle)

Anna Jaworski:

Just imagine them having a flood of letters on February 14th, because that's Congenital Heart Defect Awareness Day. This is amazing. Sajani, I feel like we are warriors together. We're mom warriors, they better watch out! You don't want to get the moms mad because the moms are going to fight for their kids. Tell me the greatest lesson that you've learned in putting this organization, and this whole event, together? I mean, you're a pioneer right now. Sajani. You're a pioneer in India. What's the greatest lesson that you've learned so far?

Sajani Nair:

It's been a new experience, to me to be very honest, because I was always this person who always kept everything to myself. I hardly ever spoke about all my problems or the issues even to my husband. So to open up to strangers, it was a challenge. But being part of this organization, it helped me evolve into this new person, the time today, imagine I could meet you, I could meet so many heart moms, so many warriors, like I got to see that their pain is no less than mine. And that until and unless I stand up for my children or for children who are suffering the way my child suffered, who else is going to do it? Nobody's going to do it for me. It has to be us. It has to be us because no one would understand what it is to be a Heart Mom...

Anna Jaworski:

That's right

Sajani Nair:

...because there is hardly much of an awareness of this kind of a condition existing. Unless we face it. Even empathy doesn't work. Actually, you have to be in pain, you have to know when to really feel it, to react to it, to respond to it. So from the sad, lonely depressed me, I have evolved to this individual who believes she can demand justice from the government. I feel like I can stand and shout and say that,"Come on! I'm here. I'm a Heart Mom! I need to be heard!"

Anna Jaworski:

You can do it. And I'll be standing right next to you, at least virtually.

Sajani Nair:

Governments are planning their trips to Mars, I want them to look into this planet and to this condition of our children. They deserve justice. They need a life of dignity, You don't put your dreams on Mars when your own plane has got so many children who really are deprived of the basic care. And another thing is, I joined this organization as a mom to my son but today I see myself as a mom to every child who was born with a defective heart. I see, I see myself more of a mom than I was before.

Anna Jaworski:

I absolutely love that. Yes, you are Sajani. Yes, you are. And you're an inspiration.

Sajani Nair:

Thank you so much, dear.

Anna Jaworski:

Thank you so much for coming on the program today. I feel like I have learned so much by talking to you.

Sajani Nair:

It was really beautiful sharing the whole thing with you. I have been carrying this thing for so long. Thank you so much for giving me a chance. I really love you. God Bless you. You are doing a great job, a really, really great job.

Anna Jaworski:

Well thank you and we have to have you come back after the letter-writing campaign. We will have you to have to come back to tell us what the results have been. Maybe you will have a chance to meet in person with some of the Government officials. That would be fabulous if you could do that. So plan on coming back. I know that there's going to be some follow-up to this and, friends, please check the show notes we'll be putting information on Facebook, too, because you know me there's a"Heart to Heart with Anna" page, we'll be putting some information out there as well. This is something that all of us need to join hands, hold each other up because we can do this and and who knows. Who knows how many lives we may save by doing this

Sajani Nair:

Exactly. The ver purpose of us on Earth; mayb this is it

Anna Jaworski:

Maybe. Thank yo for listening today. My friends I hope you enjoyed this episod of "Heart to Heart with An a" please take a moment and leav a review on whatever platform ou listen to our show. And remem er my friends, you are not alo

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 nna" with your host, Anna Jaworski can be heard every Tuesday at 12 noon, Eastern Time.

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