Glenn's Story: No Longer Lost to Care

When a newborn is diagnosed with a heart defect, life takes many turns, some sharper than others, and the future becomes a bit less certain.

Glenn Arnold was born in 1980 and diagnosed with a ventricular septal defect (VSD) at Cincinnati Children’s. A ventricular septal defect is a hole between the right and left pumping chambers of the heart. In most cases, cardiologists will not recommend immediate surgery but will closely observe the baby and try to treat symptoms of congestive heart failure with medication to allow time to determine if the defect will close on its own.

Such was the case with Glenn. His VSD was surgically closed at the age of 5 due to signs of congestive heart failure including continuous fast breathing.

"I remember being in the hospital as a kid for the surgery," says the now 37 year-old. "I remember getting several Care Bears as gifts from Cincinnati Children’s. I don’t remember much about the actual hospital stay but I do recall life before the surgery. I can vividly remember trying to play with my older sister and neighbor in the backyard. I was unable to run more than 10 feet without feeling completely out of breath and exhausted. I remember being frustrated. I knew I was different; but it was hard to understand why. A piece of me believes this experience drove me to become an athlete and lead a life of sport and exercise."

A child with a ventricular septal defect can have a normal length of life with no restrictions. Glenn is proof of this, likely on account of his mom’s encouraging attitude.

“My mom was very supportive and seldom set limits on me. She let me be a regular little boy.”

By 7^th grade, Glenn was running cross country. Team routes took him and his running mates past the football practice fields. “I thought to myself, that looks like much more fun!  So, as an 8th grader, without telling my mom, I signed up to play football. It was easy to hide until I brought home all of the equipment.”

Glenn’s mom was naturally a bit scared at first but the two worked through it after talking through the equipment and his position.

"I showed her the equipment and how the shoulder pads come down to cover my chest area. I explained that I was going to play as a lineman which meant I wouldn’t be running upright/carrying the ball while others were launching their bodies and helmets toward my chest. [Football] became a great experience for me."

While Glenn was fortunate to not face many health setbacks growing up, he faced the all too common challenge regarding his surgical scar.

"I was always self-conscious about my scar. What would people think? I eventually learned to wear it with pride. As I excelled at sports, the scar represented the fact that despite my condition I was capable of doing great things athletically. As an adult, the scar represents me as being a survivor. I embrace it. When you are a heart survivor it can impact your life in so many ways. First, you know how precious life is and you savor great moments. As a kid, post-surgery, I began thinking about death and dying. Not in a morbid way, but more in the realization that I could have died either during the operation or if I had not received the surgery. I appreciate and enjoy life’s moments more than if I hadn’t had my heart condition."

Glenn is currently being seen at Cincinnati Children’s Adult Congenital Heart Disease (ACHD) Clinic, where he entrusts the ACHD team with his treatment. They also use his case to help younger patients transition into taking the reins of their long term heart care.

"When I was growing up I went annually for checkups with my cardiologist. I remember getting several EKGs back when you had to lay still for several minutes. As a kid, of course that wasn’t easy. I fell 'out of care' during my college years. I regret that. I didn’t see a cardiologist between ages 19 to 25. I was in college, and wasn’t really sure what my insurance situation was or how to go about scheduling such things. I felt good and strong, so I didn’t focus on my CHD. Not that I was unhealthy, but I now know that ACHD specialists need [our] data, and I missed the opportunity." 

While working at Emory University in Atlanta, Glenn got familiar with his own health insurance and felt it was a good time to get back “into care” with a cardiologist.

"Growing up I played nearly every sport one could. I excelled in basketball, football, and track-and-field in high school. I was fortunate enough to receive a full scholarship to the University of Rio Grande in Ohio. There I set several school records and competed at the national championships. I was honored by my high school by being inducted into their athletic Hall of Fame. While in college, I earned both a bachelor’s and master’s degree in Sport and Exercise Science. I spent some time coaching track-and-field at the college level and I now work in Campus Recreation. In my role, I now get to give the gift sport and exercise to college students. I hope that all of them enjoy their experience, as I did."

With respect to his heart condition, Glenn has not allowed it to keep him from achieving his goals and dreams. "I am lucky to say that I haven’t had any major limitations regarding my heart health. The older I get, the more I see I have been very fortunate."

He offers the following words of wisdom as someone who was lost to care and found his way back: "Stay in care. Know that you are never 'fixed.' Every heart is different and you need to stay in the health care system for your long term health. Should something change in your condition, you want early detection. Exercise and eat well. Your heart will thank you for both."