Jeni Busta HLHS Survivor Happy with half a heart

Happy with Half a Heart
By Jeni Busta nee Sorensen (HLHS Survivor)
Twenty-Three years ago on June 25th 1985, I was born with a congenital heart disease called Hypo-plastic Left Heart Syndrome,which means I have an underdeveloped left side of the heart. In other words, I was born with only half a heart. Having my heart disease put me through a lot of emotional pain with school where I faced cruel children who made fun of me. I also had to endure being hospitalized a lot of my life. However, now that I look back at what I’ve been through, I feel blessed. All of the horrible things I faced have helped to mold me into the person I am today.When I was born my parents said I looked “beautiful and pink,” but a few hours later I was turning blue and my lips were purple. At that time, my heart began to fail. That is when the doctors made the decision to rush me into the first of many surgeries within 24 hours of my birth. Originally, the doctors’ plan was to wait a few days until I became stronger, but I started failing fast. It was a miracle I had survived. The doctors told my family that there hadn’t been any survivors of my heart disease that they knew of. Also, according to medical history and statistics, there was virtually no chance for my survival. Instead of listening to all the negatives, my family pushed aside what the doctors were saying and had faith in God that I was going to live. I was one of the first few survivors in the world to overcome all the odds of the heart disease, and the first one ever at UCLA Medical Center. I feel the decision to not wait on my first open-heart surgery is the reason I am here today to share my story.

Growing up for me was extremely hard. Throughout my life, I had to face many difficult heart procedures and surgeries. Because of being hospitalized, going to doctors’ appointments, and undergoing surgeries, I missed a lot of school, which really hurt my education. There were a lot of cruel children at school that would always make fun of me because I was so small and delicate, and because I could never do any of the strenuous exercising or running that most normal kids could do.

Graduation Day 2003

I will never forget the harsh, mean things the kids would do to me just to see me hurt. They all thought they were better than I was just because they were healthy and normal. When I was in pre-school, I was kicked in the stomach by a little boy; he thought it would be “cool” to see if I would break open because of my scar being there. Once I entered grade school, the taunting and teasing got worse; it seemed to me like it never ended. “Why do you even try to survive, Jeni, you’ll die anyway,” or “You won’t make it anywhere in life, because you will never survive,” they would say in loud voices. During P.E., the kids use to push me down to the ground while I was trying so hard to run around the field. I remember, very frequently, I would come home from school crying in my mother’s arms. Even though they hated me so, I never wanted revenge or to hurt them back. I was always taught to love your enemies and that’s what I wanted to do. Being reminded that God was always there for me no matter what was the only true thing that kept me strong. I always knew he never left my side. Despite the ridicule from some of my peers, my family and faith in God helped me to overcome the emotional and physical pain I had endured. Even though I was young, I experienced a lot, and that made me realize that God put me on this earth for a reason.

Even though I faced those horrible things in my school career, I am glad I went through the ordeal. It helped me grow into a better person by wanting to reach out to those who needed a friend. I never wish the pain I dealt with throughout my childhood on anyone; that is why I try so hard to be a friend to those who are treated harshly by others. I know what it is like to be in their shoes.

Jeni & Nick’s Wedding Day ~ July 14th, 2007
One of the ways I coped with the pain was getting involved with Heart Camp. At the age of nine, my cardiologist mentioned to my mom and me that a camp was being planned for children with heart disease. The first time I went to Heart Camp, it was also my first time being away from home. I was a little scared, but mostly excited. Each summer we spend 5 days on Catalina Island. I can honestly say that going to Heart Camp has been one of the best things to ever happen to me. It was a huge turning point in my life. I got to know many children with all different types of heart disease. Some of the people I met there are now my best friends. I find a certain bond in these people from Heart Camp that I do not have with anyone else, simply because we understand one another’s rare life challenges. We are all so much alike in so many ways, because we face a lot of the same obstacles at a young age. We all have scars on our chests, medications to take, doctor appointments to attend, and heart surgeries to go through. The overall amazing experience of Heart Camp has bettered me as a person. I actually thank God for granting me this life-changing experience that will always be a part of me.The only downfall of the camp is that some of the friends I would become so close to would pass away. One of my best friends, Daviana, unexpectedly passed away almost four years ago. Losing her was a devastating experience that taught me to be stronger. It reminded me once again that every moment God grants me to remain on this earth is precious. I realized I had not shown the ones I love how much they really mean to me until I lost Daviana. We never know when our lives will be taken away. I now cherish each and every loved one and I know that I need to continually show how much I love them.

I’m not sure what kind of person I would have become if God was not a part of my life. If He hadn’t blessed me with all the love and support of all the people I am close to, I probably would not be here today. Each and every one of these cherished individuals has played a role that contributes to the formation of who I am; they all helped me have a positive outlook on my heart disease. However, the Being who by far made all the difference is my Lord and Savior. I always thought of my heart disease as a blessing from God despite what I went through, instead of feeling sorry for myself and being depressed. I know that I am blessed by God to have such a wonderful understanding of the beauty of life. This in turn, has given me the desire to live every single day as if it was my last.

1) Jeni just before her Norwood proceedure at one day old ~ June 25th,1985
2) Just after receiving her IV for her 2nd open heart surgery the ‘Fontan’ @ 17 mos. old.
3) After ‘Fontan’ Surgery ~ Dec. 11th, 1987

Jeni age 5 with ‘bro’ Jon age 7 1990? ~ thinking about their older brother Don who was away at boot camp in the U.S.Navy at that time…

1) Jeni with her Cardiolgist Dr. Roberts G. Williams
2) Jeni & I with Dr. Williams
3) Jeni with Cardiologists @ UCLA Dr. Kathleen Maginot & Dr. Williams
I believe Jeni was about 8 yrs. old ~ 1993

Jeni in Kindergarten ~ 1990

On the left:
Jeni in 4th Grade @ age 9 ~ 1994

On the right:
Jeni in 6th grade @ age 11 ~ 1996

If you would like to speak with Jeni, you can contact her via her MySpace page or via her email. Click on the links below

This is me riding my bike. I started this hobby when I got married nearly 2 years ago. Nick got me this bike as a wedding gift. So far, the longest I have ridden is 20 miles. In November of this year, I plan on doing a 3o mi bike ride benifiting a camp for kids with CHD. I enjoy riding my bike…but I am very slow and I have to drink LOTS of water in order to make sure I don’t get dehyderated. After a long ride, I have to rest all the next day because of how tired I get.

Nick and I celebrating our 1 yr anniversary in Las Vegas

Me and Taryn. She was born with HLHS only a couple months before me. We met last year at the ACHA (Adult Congenital Heart Association) Conference in Philadelphia, PA. We are really good friends. :)




Jeni’s 21st Birthday

To read the rest of the family’s stories click on the links below: