Most 11-year-olds aren't confronted with a literal do-or-die situation, but that was the case for Valerie Azlynn, the now healthy and successful actress we've seen on TV shows like "Sullivan & Son."
Azlynn's diagnosis with a congenital heart defect (CHD) called atrial septal defect "definitely shook my world up," she says in an exclusive interview with Headlines & Global News. And two years later, she underwent open-heart surgery to correct the condition.
"I knew that it was life or death," says Azlynn, the national spokesperson for Mended Little Hearts, a non-profit organization that works to support children with CHD and their families. She also volunteers with Children's Hospital Los Angeles.
The most common birth defect, 40,000 infants - nearly 1 percent of all babies - are born with CHD every year. For Azlynn, who overnight went from a carefree, singing, stage-loving little girl to a child not knowing if she'd get a chance to live out her dreams, Mended Little Hearts is a group that is very close to her ... well, you know. With local chapters and educational symposiums, as well as initiatives like the recently concluded Rock Your Scar content and events like the Roar N' Run, Mended Little Hearts endeavors to raise awareness about CHD and let children and families know they are not alone. Rock Your Scar was held in conjunction with CHD Awareness week, which wraps up on Feb. 14.
To find out more about Mended Little Hearts, visit its official website. And to learn more about Azlynn's childhood battle with CHD, the first thing she did after her surgery and how she became involved with the non-profit, read on.
Tell me about your experience with atrial septal defect and your open heart surgery. That must have been really frightening.
It definitely shook my world up. It changed everything pretty fast. You kind of go from being a normal kid to catapulted into the world of medicine, which I had no clue about, I had been relatively healthy most of my childhood. It was challenging, and I think it was very challenging for my parents mostly, because they understood the reality of it. For my specific procedure, there were options: I could have a patch that would go through a vein and open up in my heart and the wall of my heart would heal over it, or I would have to have open-heart surgery. At the time, the FDA had not approved the patch universally, so I sat on a waiting list for a few years until I found out that I wouldn't get the patch and I'd have to have open-heart surgery. And that all happened within the span of a couple days. It was crazy.
At 13, did you understand the seriousness of the situation?
I knew that it was life or death. It was still the beginning for me with the Internet and we all didn't have cellphones. It was 1993, so I was checking books out of the library, and I didn't know any kids my age that had any of the procedures, and there was no sense of community in that way for me. I only knew my 80-year-old aunt who had a heart procedure, and I knew that my grandfather died of a heart attack, but there was never any mention of him having a medical condition; I'm curious to this day if he had maybe the same thing (as me). So I was aware, but I think I was a little naïve going into it. The physical pain after the procedure, it's rough. I mean, you're cut in half. Everything is working through a heart and lung machine, you're not really in control of your body anymore. The risk was low that I would die, but coming out of it and the rehabilitation, that I didn't really have the awareness of.
What type of role did this play in your life as a teenager after you had recovered?
I think it really changed my life the moment that I was diagnosed. I always loved singing, and I always loved being on stage, and I have a cousin Chrissy who I thought had the most beautiful voice in the world, she sounded like an angel to me. And I knew she took voice lessons in my hometown. I had done dance all my life, I stopped when I was sick, but I had just transferred to a new high school that had a middle school with it, and in this high school I had these really fantastic teachers. I was very fortunate to have Mrs. Martineau, she put me in all the theater productions, never really questioned my age, I had to audition just like everyone else, but she really let me have that creativity. And I begged my mother to go to these voice lessons, and this woman Carol met with me and she said she normally didn't take on anyone the age of 13, but given the circumstances with my health and how much I wanted it, she actually took me on to start singing. And Carol taught classical music, not pop or anything like that.
I think what that did for me is it gave me a little bit of inspiration because I found a fire in my soul because I found something that I really loved, and I couldn't wait to get back to it. I was terrified that with having open-heart, because it affects your lungs and everything in your chest when they separate your sternum, I was worried that I wouldn't be able to sing again. One of the first things I did, I was in voice lessons pretty much a week after getting out of the hospital. I remember my mom sitting in the room, and I was hunched over and obviously very ill, but I stood up and sang through my exercises, and all I wanted to do was get back and sing and be on stage and perform and do what I loved, regardless of other people, it made me happy personally. And I did. I was in "Guys and Dolls" a month or two after open-heart, singing and dancing on stage.
How did you become involved with Mended Little Hearts?
It was the first year of the show I was on, "Sullivan & Son" on TBS, and I had come to the point where I realized that there's sort of this idea when you're an actress, whether we give it to ourselves or we feel it imposed, I don't know, probably a little bit of both, but this idea of perfectionism, and for some of the roles that you're going out for, being described as the "hot, blah, blah, blah," it's like, "oh, OK." Those would be the roles I would book, and I'd show up and get nervous about telling them I had open-heart surgery. Like maybe they would fire me if they found out I had this 10-inch scar on my chest. I'm not like everybody else, but I'm a lot like everyone in my heart community, so I was really looking for a sense of community, and I knew that I wanted to speak out, because I know that some of the comments made to me growing up about having a scar weren't always the most positive.
So I found this group, and the idea of working with kids and mentoring and being able to speak out and be a role model in the community, I hadn't noticed anyone on TV with the same scar, let alone any women. I just wanted to be available if anyone needed a voice for it or someone to talk to about it, I was looking to find a group to work with, and I happened upon them. Then when I talked to them I found them to be an incredible resource for information for families, that's one of their really special skill sets at Mended Little Hearts, and when you're in a town or an area that has a local chapter, I think that that's one of the best things you could ever wander into or be a part of. Our groups are basically the heart of this organization. CHD, when you find out that you have it, you go for a normal checkup and you wind up in the hospital overnight and facing a whole new world, trying to find information and trying to find support. We live in a great age now, we can look it up, but there's nothing like being able to talk about it with someone face-to-face who's been through it.
What would Mended Little Hearts have meant to you and your family if it was available to you when you had your surgery?
Oh, I think it would have changed so much for my parents, for my siblings, and myself. It would have been so nice to know someone my own age who was going through this, because that's where I struggled the most - I was a teenage girl. There's enough for teenage girls to panic and worry about. There's enough with just being a kid, so I would've really loved to talk to other kids who had this and who had been through the procedure and being able to really ask questions to someone who wasn't a doctor. I loved my doctors and my nurses, but I wanted to see someone's face and have them go, "Yeah, maybe it's going to be a little painful or a lot painful, but you're going to make it through and it will help you. You have to do this. You don't get a choice." I think it would have changed my whole entire world.
Tell me about the Rock Your Scar contest.
Rock Your Scar came out of hearing about a few kids, just through our chapters, who had become very embarrassed about showing their scars. I think it's really tough when you're dealing with 4- or 5-year-olds entering a school environment, and just out of curiosity, when someone asks a question it can turn negative for some of these kids. Some of them have been bullied about it, some of them have been ridiculed. We have submissions from all over the world even though we're based in the United States. We had a winner our first year from Puerto Rico. It became this kind of movement where it's about empowerment. It's not just about the physical scar, there's so much more than this scar you get, and some kids with CHD don't have a scar, they have different surgeries. Rock Your Scar is like a lifestyle. How do you live your life? How are you stronger from this? To empower this kids, and so the kids that are a little afraid of showing their scar or are being bullied or do feel timid about it, they can look online and see all of these really brave kids and go, "OK, I can't do it this year, but maybe next year is going to be my year and I can submit a photo." It's not about contests and it's not about winning prizes, even though we do that, it's about who they are and their message.
What do people need to know about congenital heart defects?
The statistics. It's really mind-blowing. I think we're at like one of 110 kids will be born with it, and it's really crazy when you think about that. I don't think that people are aware that just in the U.S. this is the most common birth defect. I don't know if you knew that, but I was never aware of that, and I know that most of my friends wouldn't be aware of that. So I think it's very important to get that message out there, because if you're looking at one of 110 kids being born, the odds are that you're going to know somebody with this. It does happen a lot for babies, and I can't even imagine some of that stress that some of our parents had. I'm a patient of CHD, I didn't have to walk through the same things that my parents had to walk through, but I know that in meeting some of the parents, it's really difficult. So we want to get that message out there so people are aware and that they are aware that there is an organization that they can turn to for help. There are so many great organizations, obviously the American Heart Organization, but we focus specifically on CHD, that's what this group is there for. We do these symposiums every year that our group leaders can come to and we also invite the public to come, so you can learn about it, and we have great doctors and specialists and families and parents that speak. We're also pushing for more to be done to raise awareness with the government and get our message out there and looking for funding and looking to find what will help us lower the statistics.
What acting projects are you working on?
Right now I'm working on a one-woman cabaret, going back to my singing roots, and I would love it to have a heart theme. I don't want to give away too much, but I'll be doing something comedic with that. And it's pilot season, so it's that time of year where we all go out and audition for all the new shows. So kind of running around like a chicken with my head cut off, but it's really fun and I get to do what I love to do. And then hoping to direct, I have a short film that I'm working on called "Saturday Sunday."
