Support ACHA With Me!
Thank you for visiting my personal fundraising page for the Nashville Walk for 1 in 100. Congenital heart defects are the most common birth defect in the US. It affects 1 in 100 babies born each year, or around 1% of live births. Thanks to research and medical advancements, nearly 90% of those born with CHD survive to adulthood. However, less than 10% of those adults are in appropriate care with a cardiologist who specializes in adult congenital heart disease. As part of my work with the Adult Congenital Heart Association, I help educate patients and family members on the importance of this care, collaborate with volunteers to expand outreach efforts across the country and assist members with access to care and other issues related to living with CHD by connecting them to resources or with a trained peer mentor.
I walk for the millions like myself and in memory of my nephew, Drew. I hope you'll join my family and I on October 30 as we walk to raise awareness for the 1 in 100 or support our efforts by making a donation to our team. Information on my CHD journey and that of my nephew is below. Your support would mean so much to me.
I was born on June 16, 1987 and within days, I was critically ill with a diagnosis of coarctation of the aorta with atrial and ventricular septal defects. I had to be transferred to the local children's hospital's NICU where I was placed on medications for heart failure where I stayed until my heart was healthy enough for surgery. My first surgery to repair my coarctation (a narrowing of the main vessel that provides oxygenated blood to the body) was at 7 days old. During that first year, I was a "normal" appearing baby who met all of my developmental milestones but my coarctation surgery needed to be done again at 13 months. During the next year, I developed aortic stenosis which is where the aortic valve doesn't open properly to provide sufficient blood flow to the body. I underwent surgery #3 at 13 months old. Unfortunately, the surgery was not successful and I had her 4th surgery at age 4 1/2. It was a risky surgery. I was the youngest patient to have the procedure (Konno with Mechanical Aortic Valve Replacement) in Georgia. After over 10 hours in surgery, I had to be taken back to the OR for bleeding for a total of over 13 hours in surgery. I remember as a teenager my mom telling me about my surgeries and how at this point, my surgeon Dr. Victor Moore, came out in to the waiting room with tears in his eyes to tell my family he had done all he could do and it was time to pray. And pray they did. 29 days with many touch and go moments and prayers later, I was discharged home. Over 30 years later, I am now married to Logan and we reside just outside Nashville with our dog, Luke and two cats, Hallie and Pumpkin. I am grateful to have not needed another surgery or intervention since 1992 but I know that there is always a possibility for that. I have to take a daily blood thinner for the rest of my life and in recent years have experienced one complication that comes along with CHD, which is the development of arrhythmias. Adults with CHD may face health challenges as they age and require special planning for certain events, such as pregnancy. I am very passionate about the work I do with the Adult Congenital Heart Association and thankful to be able to share my story with others.
Drew was born on February 9, 1993 and was diagnosed with Truncus Arteriosus shortly after birth. This is a defect where the two main vessels of the heart (pulmonary artery and aorta) are fused into one "trunk" meaning that the body has a mix of deoxygenated and oxygenated blood which isn't sufficient for proper function. He had his first surgery to place a conduit to reroute the circulation in his heart as an infant. Just before age 5, he underwent his second surgery to replace the conduit and repair a leaky valve. Two other surgeries, including an infection in his heart, came at age 16. In every way, except for being smaller than his peers (I called him 'Squirt' or 'String Bean'), he was a normal toddler, child and young adult. T-Ball, Cub Scouts, skateboards, drums, PlayStation, music and soccer filled his life. What defined his life though was the amazing way that he view it, how he handled adversity, always lived in the moment and never missed an opportunity to be a true friend. He truly never met a stranger. November 10, 2013 was the absolute worst day of my life. I had worked a nightshift and received a call from my mother around 2 p.m. that afternoon that Drew "had a seizure" and my parents were on their way to check on him. That phone call turned to two others with devastating news - first, the words cardiac arrest and second that he was gone. He had went to breakfast and the grocery store with my parents that morning. This happened less than 30 minutes after he left the house. He hadn't seen a cardiologist in around two years but never complained about feeling any different. This wasn't supposed to happen. But yet, it did. Drew's death changed our family forever. It changed me forever. And he is why I walk and work for ACHA - in hopes that we can increase awareness about the lifelong nature of CHD and the need for proper care and access to that care.
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