By Todd Matthews With Kathryn Kopp
My name is Todd Matthews, and I am a 50-year-old survivor of coarctation of the aorta.
I’m not sure how I want to share my own rugged scar. A tattoo? An outline on my t-shirt? Maybe I can start by just sharing my story with you…
By the time I was 2, Dr. Norris, my pediatrician in Livingston, Tennessee, had discovered I had a heart murmur. Dr. Norris referred my parents to take me to Vanderbilt Hospital in Nashville. At the time, of course, I didnt know what it meant when specialists diagnosed me with coarctation of the aorta, but through the years, I learned what it felt like.
Shortly after my diagnosis, my little sister, Sue Ann, was born in April of 1972. I was anxious to be a big brother and looking forward to her arrival, but immediately after her birth, Sue Ann passed away from unknown birth defects.
Time went on, and I often found myself tired when others my age were running in circles. My legs started to slow in growth, and my lips often carried a bluish hue. My mother was rightly protective, often restricting me from activities so I wouldnt overdo it. Though it became my new normal, the nearly two-hour drive for check-ups, the constant reminder of feeling not quite great and my own limitations began to weigh heavy on my young mind.
In January of 1976, Mark, a healthy baby brother was born. And though he had to endure the extra attention placed upon me when I was ill, he was a kind source of brotherly companionship through those difficult years. Mark experienced a series of undiagnosed seizures in childhood as well as long-term depression issues.
As I got older, I understood more at my doctor visits than anyone realized. Diagrams were drawn, and I was astute to their meaning, but I kept my thoughts to myself.
When most boys my age began to express ideas about what they were going to be when they grew up Im going to be a fireman. Im going to be a police officer. Im going to be in the Army like my dad. I didnt truly let my mind go there. I suppose a part of me didnt feel that I was going to make it to adulthood. Already having experienced the loss of one of my siblings, I subconsciously felt that there was no sense in looking that far ahead, even just to dream. Life seemed to be a day-by-day event.
A time came when surgery was inevitable. The effects were hindering my growth and my bodys ability to circulate blood properly. So, in 1978, I underwent surgery to repair the abnormality. As supportive and caring as my parents were, I was, needless to say, nervous. I didnt have a lot of hope going into surgery. I fought it tooth and nail, all the way to the surgical suite.
There were no readily available accommodations for the parents of young hospital patients, so my parents slept in their car each night during my recovery so they could stay close to me. I could see the exhaustion on their faces, but I never heard them complain. They were at my side every moment they could be.
After the surgery, I began the slow healing process. My stitches became scars and my body became accustomed to having more oxygen. My thoughts still didnt go to the future Todd Matthews, but I did dare to dream.
In November of 1979, my mother gave birth to another son, Greg. I remember my grandmother taking my hand as she quietly tiptoed us to an off-limits area in the Livingston Hospital. I got a glimpse of my new baby brother in his incubator. That was the last time I would see him. Unbeknownst to me, he was very ill. When Livingston Hospital realized he required critical care, an ambulance came and took him to Vanderbilts pediatrics unit. Sadly, Greg passed before my parents were able to get to his side. Like Sue Ann, he did not have a fully diagnosed cause of death, leaving our family with more questions and uncertainty.
An unknown illness had stolen yet another sibling. I dont know how my parents got through those years, but the respect, admiration and love I have for them is never-ending.
I will always question whether my lost siblings deaths were caused by something similar to what I was diagnosed with. Though rare, the condition can affect newborns. There have also been discussions between my parents about whether these medical issues may have been brought on by my father being stationed in Vietnam and exposed to Agent Orange. Whatever the cause, it certainly brought heartache to my family.
Today, I stand a healed man in many ways. I am a healthy 50-year-old who has been married to my lovely wife, Lori, for 32 years. We have grown children and grandchildren, none of whom have had any related medical issues. I am blessed.
As I entered young adulthood, I slowly allowed myself to be free of what had become normal to me. I created my own reality as an appreciative man with dreams and visions of the future. I didnt know what my future held at that time, but I at least felt that I was going to have one.
I learned of Mended Little Hearts when I worked with the organization NamUs. I was hiring for an assistant position, and the woman who interviewed was a member of the organization. While doing so, she shared with me the medical issues her son was going through and their involvement with Mended Little Hearts. I was immediately empathetic to her journey, and it was at that time I realized that my gift of life had given me this amazing platform. I wanted to use it to generate more awareness and share my knowledge and experiences with others who may be going through struggles of the unknown in this area of the heart.
I realize how fortunate I am to have lived such a good life and to have survived when I didnt think I would. As a child, I never thought I would be here today. I had a grim outlook. Yet here I am.
Kintsugi is the ancient Japanese art of fixing broken pottery. Rather than repair and camouflage, the Kintsugi technique uses lacquers and powdered precious metals. Once complete, the obvious cracks are highlighted, and the repaired object is considered more beautiful than the original.
The scar once a thing I tried to hide was not an injury in itself. It was the “kiss print” of the process that saved my life. The scar itself is not a wound, but the very symbol of survival that I am proud to wear on my side.
Todd Matthews is a sought-after speaker, teacher, consultant and writer based in central Tennessee. He is one of the leading voices in the crime community, a pioneer of the amateur sleuth community and an architect of that communitys online presence as well as U.S. government programs to identify missing and unidentified persons.
Matthews is believed to be one of the first people to use online tools to solve a cold unidentified remains case, the 30-year mystery of Tent Girl. He quickly became one of the online sleuthing communitys leading lights, helping to found The Doe Network and serving as the media director for that program and Project EDAN. A leading expert on issues pertaining to the missing and unidentified, he has provided expert commentary for Discovery ID and served as a consultant for Jerry Bruckheimer and Dick Wolfe on entertainment projects.
Matthews is the former director of case management and communications for NamUs.gov, the national online database for missing and unidentified cases. He was part of the advisory board for the development of the database. He oversaw the quality of data, provided outreach and training, and coordinated NamUs media. He also piloted efforts to coordinate data exchanges between NamUs and the National Center for Missing & Exploited Children.
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