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The Fear of Someone Missing Me

May 5

Posted by: ACHA
5/5/2014 11:59 AM  RssIcon

By James Bachenheimer

Being born with a single ventricle, my life was filled with challenges before I even knew how to hold my head up. By the time I was five years old I had already undergone four open heart operations, so I never really knew what it was like to be a healthy, active boy. I was Jimmy, the kid with the bad heart, the kid who you couldn't tackle while playing football, the kid who wore heart monitors to school—my health would always be what defined my life.

I reached adulthood and already had another operation under my belt (I was 11), the only one I truly remember before my 20s. I honestly never thought I would live to 30 but here I was about to turn 29. I was feeling pretty decent. On my 29th birthday I walked into a bar and sat down and chatted with a pretty blonde bartender.

The next weekend we ended up dating and very early on I knew this was no fling—I had fallen in love. Terra was there for me, listening to my stories of surgeries past and my future fears, and helping me cope with my mortality. Just before New Year’s Eve we found out Terra was pregnant and a rush of excitement and fear suddenly filled my head.

Shortly before I met Terra my health started to decline—my old classic Fontan was breaking down and I needed to get it revised. Terra was my rock during the fall and winter of 2010-2011. I had an immense fear of never meeting my unborn child and never getting to be the family I had always wanted. I hid my emotions and only shared them with Terra, which made me feel even guiltier for putting her through this.

I had five major open heart surgeries in my life, but nothing like this. Although Terra and I wanted a life together, I was always afraid I would die early in life and didn't want to leave behind a family. I know how conceited this is, my fear is someone missing me. There was a point where I was considering not undergoing the Fontan revision but I reconsidered because I wanted to live a better life for my family and be there for my child.

Terra and I talked about our fears and our hopes for our child and we knew what was the right thing to do for our growing family. Terra has understood and accepted me for who I am from the moment we met, but I still felt a feeling that had held me back my whole life. I never had a real love until Terra because I never wanted one. I was afraid of love, I was afraid of life and I was afraid of living.

I underwent my Fontan revision in Pittsburgh on February 11, 2011. My whole family was there. I gave Terra a hug and a kiss and told her I loved her. Walking back to the operating room, I knew my child would be in perfect hands with or without me. I recovered and watched Terra grow into a very pregnant, very beautiful woman. We did a few tests to make sure the baby was healthy and wouldn't have to know what it’s like to be like her daddy.

On August 29, 2011, Brooklyn Ava Bachenheimer was born. Terra and I created a beautiful baby girl. Now Brooklyn is almost three, and is the most amazing, loving, sympathetic, caring, and fun little girl a father could ask for.

Unfortunately the Fontan revision did not work out and I am now on the transplant list. Now that I am in need of more surgery, especially something as major as a transplant, there is a new level of worry and fear along with it. My daughter now sees what goes on and knows Dad can’t play, or knows when I am sick. I can no longer work and we have to live in affordable housing, but being together as a family is all that matters to us. I have conquered every battle I have fought and I will not lose this one.

James Bachenheimer was born in 1981 in Oyster Bay, New York, and was diagnosed with a single ventricle in the first weeks of his life. He has undergone two Fontans and four other open heart surgeries. James, who comes from a family of five, spent the majority of his life in the Tampa Bay area of Florida, which he still loves. James would like to thank his doctors in New York, Tampa and Pittsburgh for all their hard work and dedication to him and his family. As James says, “They truly have made my life possible.”

Copyright ©2014 ACHA

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1 comment(s) so far...


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Re: The Fear of Someone Missing Me

James- Thanks for sharing. As a father with a congenital heart issue I know exactly where you're coming from. I had been diagnosed with a CoA in 2004 and went through mulitiple cardiologists for different reasons and my search for a qualified Dr. went into overdrive Jan. 2010 when we were expecting our first child. Ended up having a panic attack April 2010 due to the heart health anxiety and feeling like I would never see my unborn child.

It took over 3 years to find my cardiologist and underwent open-heart surgery this past February. My wife and I have two kids now 3.5yo and a 2yo. I'm not sure I could have done this without my wife. Recovery has been hard being a father of 2 small kids that want to use me as a jungle gym but, I know I'll be around longer for them.

It was good to read the story of another young father and I hope you have success on the xplant list and can be around much longer for your family!

By EL on   5/5/2014 1:54 PM

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