Skylar’s story: My heart surgery scar makes me appreciate life

Congenital heart defect patient Skylar Bayer as toddler

About the blogger: Skylar Bayer, 28, is a PhD student at the University of Maine. When she was one day old, she had open-heart surgery for transposition of the great arteries, a congenital heart defect where the heart’s two main arteries are physically swapped. But her heart defect didn’t keep her from being a kid like any other and hasn’t stopped her from following her passions. If anything, it’s made her appreciate life all the more. 

I can still recall being a five-year-old girl in the women’s locker room of the swim and tennis club my family attended in the summer. I’m peering around the room at all the other girls’ and women’s chests, and I notice for the first time that no one else has the same six-inch scar down the middle of their chests that I have. Until then, I thought that everyone had that scar.

It was the first time I started to realize that I had had a very different experience coming into this world than most people around me.

When my mother was pregnant with me, her doctors discovered that I had a congenital heart defect called transposition of the great arteries (TGA). Luckily for my parents (and me), they lived just outside Boston. I was born at Brigham and Women’s Hospital on September 1, 1986, and had heart surgery at Boston Children’s Hospital the next day. I was home nine days later.

Not a kid in a bubble

I grew up having annual visits with a pediatric cardiologist. As a kid, I enjoyed these special heart checkups. Thanks to my nerdy parents (in the best way, Mom and Dad) and my nerdy brain, I was interested in science at a young age. After all, how many kids got to see ultrasound pictures of their own heart?

Growing up, there were certainly peculiarities in my life. Like having to take antibiotics before visiting the dentist and occasionally wearing a heart monitor to school for 24 hours while logging my daily activities. And when a high school boyfriend came down with strep throat, I had to go on antibiotics because his strep bacteria could have infected the scar tissue around my heart. (I still remember the rather embarrassing phone call from his mother to mine.)

Even with my history, though, my parents never treated me like I belonged in a bubble. My mother told me recently that she wanted to make sure I didn’t grow up scared to do anything. She wanted me to develop a strong, healthy, athletic heart, and more than anything to become the best person that I could be and live life to the fullest. I was still allowed to play in the woods; I always had to work my hardest on homework and in sports; and I wasn’t allowed to whine more than anyone else. And I battled with growing up like any other teenager. 

By high school, I was old enough and had studied enough biology to really appreciate how fortunate I was to be alive, and how by nature’s rules I really shouldn’t have made it much past a few weeks of life. And how my heart could handle being very athletic to the point that in my senior year I made captain of the crew team (a feat I still attribute to politics more than athleticism).

Bad signals

About three years ago, I became very ill, sleeping about 12 hours a day and experiencing strange, plaguing, irregular heart beats. I was convinced I had mono, Lyme disease or maybe the Black Death.

I asked my cardiologists at Boston Children’s for a series of tests. My 24-hour Holter monitor recording showed evidence of ventricular tachycardia (VT)—which can be fatal if left unchecked—while I slept. They called me into the hospital the night before Thanksgiving.

Rhythm issues like VT are a problem of the heart’s electrical “wiring,” so I had an electrophysiology test to determine what was wrong. It turned out that bad electrical signals were coming from several places in my heart, meaning I had a condition called polymorphic arrhythmia (PA).

It’s still not clear why I started having these episodes. It’s not related to the scar tissue on my heart from my TGA surgery. Maybe my heart would always have developed this way. Maybe it was some environmental influence. We just don’t know.

Because doctors can’t fix PA, Douglas Mah, MD, implanted an internal cardiac device (ICD) in my chest as a safety net. That meant that the scientific SCUBA diving career that I had just started was over (scientific divers aren’t allowed to dive if they have VT or an ICD). The same went for the captain’s license I’d hoped to get through the Coast Guard.

The good news is that my ICD has only gone off once (costing me a Brazilian Jiu-Jitsu match in the process), and my irregular heartbeats have become less frequent, particularly with exercise. However, it took more than a year to really feel like I could push myself physically without worrying about triggering my device. 

“My challenges … haven’t crippled me.”

Even though I’m 28 and live in Maine, I still go to Boston Children’s because it is, frankly, the best congenital heart center in the country. I see cardiologist Mary Mullen, MD, PhD, and nurse William Kerr, RN, in the adult congenital heart service, for my ongoing care. And now I also see an electrophysiologist, Mark Alexander, MD, to keep an eye on my polymorphic arrhythmia.  

To the outside observer, being seen at a pediatric hospital as an adult might seem a little odd. However, my heart condition is a congenital one, and more often than not, adult cardiologists aren’t as familiar with the best approach to diagnosis and treatment.

But apart from that, the doctors and nurses here really do care about their patients. They want to see their cardiac patients do all the things other people can do in life. More than anything, they want to see their patients happy.Congenital heart defect patient Skylar at the roller derby

My challenges as a child and my episode three years ago made me who I am, but they haven’t crippled me. I’m still fascinated by science and the natural world, which is why I’ve spent at least ten years making a career out of studying it, first in college, then as a master’s student and now as a doctoral student at the University of Maine. I still do physically exhausting activities at work. I’m on a roller derby team, I go on hikes with my dog, and I have a normal personal life with my boyfriend. I’m enjoying my life.

The heart surgery I had at birth was simultaneously the least and most important part of my life. It gave me the ability to live, but I’ve never let it get in the way of living. And while the scar I see in the mirror reminds me how fragile I am, it also incites inspiration and appreciation for the life my care has given me.