Living with a Fontan Circulation – Tricuspid Atresia by Jara Weinkauf

Even though there was no history of heart disease in my family and my parents led a very healthy lifestyle, I was born with tricuspid atresia in 1986 in Berlin/Germany.

Doctors noticed that my skin was very blue and something had to be wrong with me.

After a palliative operation as a baby, I had a Fontan surgery when I was four years old to fix the cardiac defect. A Fontan operation was still very new at that time, and the operating surgeon had just come back from the U.S. were he learned to do this operation. If I had been born maybe five years earlier, my chances of survival would not have been as positive.

During my childhood my parents always supported me in anything I wanted to do, but naturally they were more cautious when it came to sports. All I wanted was just to be like the other kids though. Therefore I always tried harder and never really accepted help. It took me a long time to learn that it’s ok to get help or take breaks.

Although I was doing very well during my teenage years and there weren’t any complications growing up, I needed another open heart surgery in 2015, when I was 28. This was to ensure my heart could continue doing such great work it had been doing all along. During an open heart surgery an external tunnel made from Gore-Tex was created to manage the blood flow. During this procedure I was also fitted with a pacemaker to support the heart.

Undergoing such risky operation when you are an adult makes you reflect. I started appreciating my time even more and try to use all my free time to explore, see friends and also connect with fellow CHD patients. I have never let my congenital heart defect stop me from creating a career, do sports, travel or have a relationship. It is important to me to advocate for an active life, to show patients, carers, supporters, family members an so on, that life is still fun and doesn’t have to be all worry.

I started getting more involved in the CHD community and love meeting fellow patients. Moreover I have launched a blog, Optimistic Heart, where I am advocating for an active life despite a severe cardiac condition. Facing challenging topics as pregnancy, it feels great to hear other stories, share experiences and knowing I’m not alone with my condition.

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National myheart meeting-16th March,2024

A myheart members’ meeting was held at Friends House, 173-177 Euston Road, London NW1 2BJ, between 2pm-5pm on Saturday 16th March 2024. Please

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