My journey didn't start with my birth in 1986.  It started with the birth of my brother in July of 1983.  Daniel was my parent's first child.  He was born with Heterotaxy Syndrome, which means the left side of his body internally copied the right.  He had no spleen, many GI abnormalities, and severe complex congenital heart disease.  Daniel was 22 months old when he died following a heart catheterization in May of 1985.

Daniel died May 21st, 1985.  He was laid to rest on May 26th, 1985.  Our healthy sister, Shannon, was born in July of 1985.  I was born on May 26th, 1986.

I was born with the same syndrome as Daniel.  My parents had just experienced their first year without their beautiful baby boy, following his CHD journey, and were suddenly thrust into the CHD world once again.  They were given the options to take me home and die peacefully without enduring the surgery and medical interventions that they just watched their son go through. 

My parents made an impossible decision.  They were going to try to give me the best quality of life as possible. 

I did not have a spleen, leaving me even more vulnerable to infection, my stomach wasn't connected to my intestines, I had multiple other GI defects, and two trilobed lungs.  Much later they discovered I had a cilia dysfunction as well.  My heart defects include: a single ventricle, single atrium, TAPVR, TGV, pulmonary stenosis, and a common AV valve. 

I had a shunt placed in August of 1986 during my first open heart surgery.  I had a classic fontan done in December of 1987.  Nowadays, they do the two stages that I had in three stages, and wait until the child is a little older so that they weigh as much as possible.  They were trying to do the surgeries younger and younger when I was having my surgeries.  All of the other babies they tried this on at that time passed away.  This is how they learned the best way to get the babies to survive now. 

I started having rhythm problems in high school.  I ultimately had a pacemaker placed in my abdomen due to my unique anatomy in October 2005.  I had an extracardiac fontan and Maze Procedure done in January 2006 during my third open heart surgery.  Two weeks later, I was back in college full time!

Since then I have had my pacemaker replaced once (in 2012), I've had pancreatitis, and some rhythm problems.  Overall, I have been doing amazingly well!

I have a BA in Psychology and Philosophy.  I have a Master's Degree in Marriage and Family Therapy.  I am a Licensed Marriage and Family Therapist.  I am engaged to the love of my life.  I look forward to starting a family in the next few years, despite being fully decided that I will not be taking the risk to carry a pregnancy.  I am happy and my life is so fulfilling.  I am beyond thrilled to be working at People Incorporated, where I am inredibly satisfied with my job and the support I receive from coworkers. 

I wasn't supposed to be alive today.  But I am alive, because my parents and the doctors at Minneapolis Children's Hospital believed in me.  Dr. Helseth, Dr. Moga, Dr. Sutton, and their amazing team saved my life.