2022 | HFSA

Living with Heart Failure: Madison Shannon's Story

Patient News Heart Failure Awareness 365
Madison as a young girl
Madison as a young girl with her brother, mother and father

Madison’s story starts 22 years ago. She was born with a rare genetic disorder called Turner Syndrome, where less than 2% survive birth. After her birth, doctors quickly noticed something was not right, and she was immediately transported to Kosair Children’s Hospital, where she had her first heart surgery at 12 hours old. 

Fast-forward to 2003, Madison is now three, has a one-year-old brother, and another sibling on the way. She is diagnosed with heart failure and then ends up having an emergency heart catheterization, while discussion of a heart transplant is taking place. 

After five long months of waiting and being terrified of the unknown, she gets a fighting chance. The cardiologist offers an alternative to a heart transplant; a surgery that would be aggressive but could potentially allow her to live with a mechanical aortic and mitral valve ring. Her surgery is scheduled a week before Halloween. 

Following her surgery, the cardiologist comes out crying with relief. It was a success. She came home on Halloween. Madison dressed up as a ballerina.

To keep up with Madison as she goes through her journey, follow her on Instagram: @madisonshanonn


Read on for a Q&A with Madison:

How has your experience impacted your life growing up?

I actually had open-heart surgery again last December, so I’ve been recovering from that. As far as my psychological and social well-being, it’s affected my friendships and relationships. My best friend asked me to be a bridesmaid in her wedding, but I had to choose to put my health first instead of supporting her, which is really hard. 

Although it’s been difficult, it’s also put me on the path I’m on today. Right now, I’m serving as a counselor at Camp Braveheart, which is a camp that welcomes families and children with congenital heart disease. I’m also currently in graduate school for counseling in psychology. My goal is to counsel medically complex children and help them on their journeys. From personal experience, I feel like there is a lack of post-operative care and knowledge of psychological medicine, and I’d like to make a difference for others.

Do you still deal with symptoms of heart failure to this day?

I don’t currently have any heart failure symptoms. In December, I had my aortic valve and mitral valve replaced (both mechanical), so I’m mainly dealing with fatigue right now.

What types of lifestyle changes have you had to make, if any?

I was three-weeks post-op and planning to go back to school full-time since they were offering the virtual option due to COVID-19. They ended up changing it back to in-person only, so that put me behind a year in my schooling. As mentioned before, I also have to put my health first over a lot of my personal friendships and relationships.

If you could give anyone who lives with heart failure advice, what would it be?

Before my last surgery, my cardiologist from birth called me and asked what I was doing with my life. I told him I am in graduate school and would like to counsel medically complex children. He said, “You have turned what most people would see as a liability, into a valuable asset.” And that’s what I’d tell them: You are a valuable asset, not a liability.