Samanta: I want to encourage people.

​My story: Life as an adult with a congenital heart defect
I was born in Solothurn on 12 January 1987.
Weighing 4350 g and measuring 54 cm, I was a large and heavy baby. Shortly after my birth, however, my parents and the doctors realised that something was wrong with me. I was turning blue, so they had to act quickly and I was immediately taken by ambulance to the Inselspital hospital in Bern.
The diagnosis was TGA (transposition of the great arteries). In my case, the aorta is connected to the right ventricle instead of the left ventricle. The oxygen-depleted blood coming from the body is sent straight back into the circulatory system, which is supposed to supply the organs with oxygen. On the other hand, oxygen-rich blood from the lungs is senselessly returned from the left ventricle to the incorrectly connected pulmonary artery. The result is what is known as cyanosis. The bluish discolouration of my skin immediately after birth is a symptom of this condition. The first procedure, an atrial balloon septostomy (Rashkind procedure), had to be performed immediately. A catheter with a balloon was inserted into the left atrium of my heart via my right groin. During this procedure, the balloon is inflated and immediately pulled into the right atrium, enlarging the opening in the atrial septum and allowing oxygen-rich blood to enter the body.
The fact that I was born so large and heavy meant that I did not have to undergo major open-heart surgery immediately after birth. In 1988, I underwent Sennig‘s atrial reversal procedure.
This involves removing the atrial septum and creating an artificial diversion of venous blood at the atrial level so that oxygen-rich blood can enter the body‘s circulation. However, the aorta and pulmonary artery remain in the ‘wrong’ places. This means that, contrary to the natural circulation, the right ventricle now pumps into the body‘s circulation and the left ventricle into the pulmonary circulation. It sounds crazy, but compared to a healthy heart, my heart functions ‘backwards’.
Today we know that one in every 100 children is affected. That is a lot, and there are various heart defects and diseases. Specialists told my parents many things, such as that I would not reach the age of six, that I might have fine motor skills problems, that brain damage might become apparent later in my development, that my growth would probably be delayed, and much more. Fortunately, none of this came to pass. You don‘t always have to believe everything doctors say, and you can continue to hope even when faced with grim prognoses.
My two siblings are perfectly healthy. I am the middle child. I am the only one in the family with a heart defect, but I was not treated any differently from my siblings. Over the years, I have developed wonderfully. At school, I took part in physical education classes, was allowed to play outside with other children, let off steam – in other words, I did exactly the same things that ‘healthy’ children do.
My heart defect wasn‘t really mentioned much throughout my childhood and adolescence. For a long time, even the routine check-ups were forgotten. I can only remember that when I was a teenager, the examinations took place every two years, as is still the case today.
However, at that young age, I became very aware that I was different from other children. The large scar on my chest and the one on my leg remained visible and reminded me of this.
Very few people know that I was born with a heart defect. I don‘t want to be treated differently or receive pity from those around me.
After school, I completed an apprenticeship as a structural draughtswoman with a vocational baccalaureate. In 2012, I started studying architecture in Burgdorf while working full-time. I have been working as a qualified architect since 2017.
I lead a completely normal life, just like healthy people do, nothing spectacular. I devote 100% of my time to work and household chores, and the rest to my hobbies.
After my major operation, my life has been very straightforward. You get older, I got older, just like normal. When the next routine check-up is due, I do worry and wonder whether everything is OK. I do feel a certain amount of uncertainty or even fear, otherwise I would be lying. Over the years, however, I have learned to deal with it.
I do everything I can to positively influence my health. Various factors play an important role in keeping my ‘repaired’ heart as healthy as possible. Take nutrition, for example. I always cook fresh, varied and colourful meals, usually Mediterranean, to ensure I get all the nutrients and vitamins I need. I buy my vegetables, fruit and meat from organic farm shops.
Another factor is mindset.
Unfortunately, life isn‘t all sunshine and rainbows. I‘ve had difficult times in my life, but who hasn‘t? I had to deal with misfortunes, breakups, losses, etc. at a very young age. Your heart aches and your emotions are very intense and palpable.
But you mustn‘t lose hope and you have to fight back. What I have learned above all in recent years is to be resilient. If I cannot change anything, I accept the situation, or if I can do something about it, I take matters into my own hands and act.
In today‘s hectic everyday life, it is all the more important to take care of yourself and do things that are good for the heart. For me, that means long walks in the forest or spending time with good friends. Animals also have this great strength that allows us to find peace again in their presence. That‘s why Elsa, my neighbour‘s cat, and Icona, my colleague‘s Lassie dog, are very important to me; they contribute a lot to my well-being. Animals are often better people.
In my spare time, I like to pursue my hobbies. One of them is drawing and painting, as well as trying out different fonts and designing homemade cards. Even as a little girl, I had countless colouring books, and in nursery school I was always painting and drawing. It‘s like therapy, where you can forget about time.
Indoor and outdoor plants are also a great passion of mine. You can never have enough of them. The same goes for flowers. For me, they are the smile of the earth and are good for the soul.
But the most important thing in my life is sport.
Despite my heart defect, I‘m doing quite well. Of course, there are limits. I know that I will never be able to run a marathon or be a professional athlete. But I don‘t want to. The joy of movement has always been there.
I currently do CrossFit and weightlifting at CrossFit Öuf in Zuchwil. I started this sport in February 2022. For a long time, I watched the videos showing what we would be doing in training and wondered if I would ever be able to do it. And whether it was even possible to achieve this high intensity or combine strength and endurance training, which is no mean feat. It works and I enjoy it so much. I have fixed training times and go training five to six times a week. I am very grateful that I can keep up so well with sport. I did very well in my last stress test. Exercise and sport have strengthened my heart. What I can‘t do over long distances is jogging. I simply have to stop briefly to bring my pulse down before I can continue jogging.
CrossFit combines strength and endurance training, explosiveness, gymnastics, i.e. elements from gymnastics, the sensible structuring of long training sessions and estimating how heavy the weights should be during such a workout. It also means getting to know your personal limits, pushing them a little, but without overloading yourself. All of this has strengthened my heart and my mindset. But CrossFit is also a place where you can spend wonderful time with wonderful people. I am very grateful to be part of this community, or ‘community’ in CrossFit parlance.
If you want to know more about me or don‘t believe how I can keep up in training, come and see for yourself! I want to encourage people with heart defects and their families, convince them not to be afraid to do sport and that they can lead a normal life. Stay positive and look for alternatives. It doesn‘t have to be CrossFit.
Thank you, Swiss Heart Foundation, for allowing me to reach so many people with my story.
A huge thank you to Chantal Oberson (top CrossFit athlete) for reading through my story.