Bistra Zheleva Interview

This interview with Bistra Zheleva is a part of an ongoing series focusing on the healthcare workers and advocates who serve families affected by Congenital Heart Defects (CHDs). Stay tuned to hear their stories! If you would like to share your healthcare story and why heart screenings are important to you, write us at give@onehearthealth.org

Introduction: 

I was vice president of global strategy and advocacy at Children’s Heart Link, which is a global NGO that supports, builds capacity and advocates for access and improved access to pediatric cardiac care in low and middle income countries. I have been with Children’s Heartlink for 18 years. I work with a lot of healthcare providers, doctors, and nurses, who are in the pediatric cardiac space.

What motivated you to work in the nonprofit space?

For me I was interested in working internationally…I really liked the healthcare space and so those are the opportunities that I was looking for. Personally, equity is one of my values and I see that inequities are very much demonstrated in social issues like lack of access to healthcare. So I think for me, that’s a very important part of the job that we focus on improving equity globally so children around the world who have heart problems can have access to high quality care and their families can be more confident that their child would get the best possible care and will survive and thrive and live their life to the fullest. 

Future prospects is a very important thing that is kind of a uniting factor can be uniting factor around the world, no matter where you come from, what you believe, everyone really wants children to do well and to be healthy.

Are there any specific cases or memories from working in these areas that stand out to you?

Most of our work focuses on training and providing education and improving their skills and the quality of their outcomes, and so patients and families’ perspectives are important there. Over time, I have made it into a goal for me that every time I visit a partner site, I actually get to speak to the families.

Its a very uncomfortable thing to do because when you go to the hospital and when your child is hospitalized with a very serious illness, its a very vulnerable moment for them. But I also find that it’s very hard for me to talk to them as a parent. 

I talk to them because there’s big benefits that come from speaking with families. First, it keeps us grounded – as to like “Who are we actually helping?” Most of the systems that my organization provides is to doctors and nurses, but the families and children are the ultimate beneficiaries of this work. 

Also, learning their stories is extremely important for us to know what they are experiencing. No one can represent their stories better than themselves. The second reason is that we learn a lot about the context in which they live and the challenges that they have. You find out details that are not known to the physicians and some of the hardships that they have experienced.

The doctors we work with are all so busy and so focused on doing a good job, and solving the problem in front of them, but they don’t always have the time to have these conversations. And so relaying that information back to them is a very important part.

Do people ever hesitate to share their stories?

Yes, even though it’s a vulnerable time and some people will say, “Sorry, I don’t want to talk to you,” that’s fine. But some are actually more than happy to be telling their story and to be sharing it with somebody that is interested in learning, and talking outside of the clinical details of the problems that their child is experiencing. 

It’s very humbling experience for me to speak to these families.

Even though it’s uncomfortable, I make an effort to do it every time I visit one of our partner hospitals and to meet them, to take the time to learn about their children, and learn about their stories. 

I’m sure these conversations can get emotional at times. Is there any particular thing that stands out that’s common that maybe a lot of families talk about? What it means to them? Is there anything that stands out to you?

Everyone has exactly the same feeling when their child is sick. Doesn’t matter where you are. It doesn’t matter where you live. Every parent feels exactly the same anxiety when their child is sick and not knowing how things are going to go for them and for this child, even in the best centers in the world.

Even if the doctors tell you this is going to be fine, you still worry because you are parents and you love your child. People love their children the same way all around the world. It doesn’t matter. So I think that’s a completely common theme, regardless of where you are.

What is a change that you would like to see within the healthcare field?

There are many, but specifically in pediatric cardiac care, I would like to see local governments invest more in it and also making it more connected with primary care so parents don’t have to experience any disruptions in the healthcare process and they don’t have to search for answers themselves. I would like to see a more seamless process, a continuum of care that they can experience – that’s what I would love to see. 

And I think that’s an ideal state that maybe not many places in the world have, but that would be my goal with my work. 

Where is the majority of the funding for this work coming from?

All of our work is funded through donations, and they are really vital to our work. 

Okay. Thank you so much! 

All right, of course. Bye-bye.