Amy McArthur - The heart of a survivor & the unlikely face of heart disease
Amy McArthur is the proud mother of a son born with a congenital heart defect. Her employer, Advance Auto Parts is supporting the American Heart Association’s Life Is Why We Give campaign May 16-June 16, which raises money to support the Association’s mission and fund vital research to help save lives and improve treatment for people like her son, Alex.
Alex was born on December 10, 2001. At his two month well visit, his pediatrician heard something that he didn’t like when he listened to Alex’s heart. He sent us to UPMC Children’s Hospital in Pittsburgh, PA. While there, Alex had an EKG, followed by an echocardiogram. The echocardiogram showed that Alex was born with a “special” heart – he had a bicuspid aortic valve and an ascending aortic aneurysm.
At that point in time, our world turned upside down. Alex was immediately put under the care of a pediatric cardiologist. There is no cure for the type of heart defect Alex has or easy surgery that can fix Alex’s heart. At some point in the future, when his aortic valve or aorta needs to be replaced, it will be major surgery.
A normal heart valve is a tricuspid, or has three leaflets. A bicuspid valve has only two leaflets, where two of the leaflets fused together some time in the womb when the heart formed. An aortic aneurysm is a balloon-like bulge in the aorta, the large artery that carries blood from the heart through the chest and torso. The force of blood pumping can cause either a dissection, which is a splitting in the layers of the artery wall, allowing blood to leak in between them, or a rupture, in which case the aneurysm bursts completely, causing bleeding inside the body. The bicuspid valve isn’t the real concern for us; it’s the ascending aortic aneurysm.
No parent ever wants to learn that there is something seriously wrong with their child, and we had to come to terms that. I cried a lot! I couldn’t stop thinking - Alex wouldn’t have the same opportunities as other children; he wouldn’t be able to play contact sports; he would have to have open-heart surgery; he might not live to be old and gray. I needed to breathe and learn to put things into perspective, not only for myself, but for Alex and my husband too. Steve and I needed to accept that while we couldn’t change the reality of the situation, we could change the way we looked at this and most importantly - how Alex looked at his “special” heart as he grew up.
For Steve and me, we chose at that moment to look at this as a blessing. We will never know why God gave Alex a “special” heart. We also realized that none of us are guaranteed tomorrow. So instead of worrying about the “what ifs” of Alex’s heart disease, we chose to raise Alex as a normal child. We settled into a routine, complete with rules and a set bedtime, manners and school, adventures and chores. The best part about this is that we look at each day as a gift and we enjoy the moments. Not everything is picture-perfect and there are definitely trying days and times, but there is so much to look forward to each day.
Alex was able to play baseball and basketball for several years when he was younger. He wore a heart guard to protect his heart from direct contact from a ball or elbow hit. Even though he’s retired his baseball cleats and basketball shoes, you can find him playing a game of pick-up with his younger brother in the driveway most days after school. If you ask Alex what sport he would love to play, his answer would be hockey. He may not be able to play, but he loves watching his favorite team, the Pittsburgh Penguins.
In a world where we tell our children to “dream big” and the “sky’s the limit”, it is hard to tell your child that he can’t aspire to be something that he so deeply desires to do because of something that is completely out of his control. While Alex has learned to accept the limitations of his heart condition, there are times that bring him down. Alex has a deep passion for protecting and serving others and an unwavering love for his country. When Alex was in middle school he wanted to follow in his Dad’s footsteps and serve in the military. We had to help him understand why he couldn’t do that. Shortly after that, he decided that he wanted to be a police officer and he has never wavered from that moment on. He knows that he may not be able to be on the street as a beat cop or even a detective with his heart condition, but he is determined to realize his dream.
Alex is now 16 and continues to thrive. He’s a sophomore in high school and is very active. He is still under the care of a pediatric cardiologist and we have had fantastic care throughout the years. First at UPMC Children’s Hospital in Pittsburgh, then at UVA’s Children’s Hospital in Charlottesville and now at Duke Pediatrics here in Raleigh.
As for medical advances with this type of heart condition, it is hard to believe how far medical treatments have come in just 16 years with the help of science and technology. What was once 100% guaranteed to be open heart surgery, can now be repaired with less invasive options. Endovascular surgery will hopefully be a possibility for Alex when he needs to have his heart repaired.
For our family, we have been touched by heart disease in a unique way. My hope is that Alex is able to grow up, graduate from college, have a career, marry the woman he loves, and have children and eventually grandchildren. And when he has lived a long and fruitful life, the good Lord will call him home. While to many, Alex may be a survivor, to us he is our son and we will always love him and be so very proud of him!