How One Artist Illustrates Life With a Fontan

I was born with a single ventricle and underwent four open heart surgeries. I live with a Fontan circulation. One of the struggles of growing up with a complex CHD was not fully understanding my heart condition. I was never informed in detail about my anatomy, and the clinical notes provided for me were dense with medical terms and difficult to read.

While I was an undergrad, I had an emergency because of surgery complications (hemoptysis, coughing up blood). At the time, I had not established care in my new city. I struggled to explain my conditions in the emergency room, and the medical records I provided were the only clues my physicians could use to assess my situation. I underwent surgery and was able to recover. It was a wake-up call for me to begin my own self-education about my heart condition. After weeks of reading medical records, consulting my doctors, and digging online for Fontan resources, I was able to create a clearer picture of my heart anatomy.

I received extensive training in design during my education at the School of the Art Institute of Chicago. After graduating, I studied science illustration at California State University Monterey Bay through their graduate certificate program and combined my design skills with science communication. I learned to convey complex scientific concepts through visual mediums that appeal to different audiences. I’m currently a freelance artist.

I know too well how difficult it is to live with the Fontan, the struggles of comprehending this complex anatomy from the few resources available, and how powerless it feels to not know what’s wrong with my own body. The Fontan animation I created and shared with ACHA (click here to view) was a pilot project I made during my graduate program, and I hope to create more patient education materials.

As a science illustrator, I want to help close the gap in patient education of the Fontan and CHDs. I believe that when patients are more empowered with knowledge, they can better advocate for themselves, make more informed decisions, feel better prepared in an emergency, and proactively live a healthier life.