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 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."
