My parents found out that I had a sick heart in September 2018. I am very grateful to the Doctor who noticed it. Thanks to this, I was able to quickly undergo further tests with my mother in Poznań and Warsaw, during which it turned out that there was only one ventricle in my heart. There was no agreement, only whether left or right … It was not easy to determine, because apart from that my defect is accompanied by several others among which are shifting large vessels and dextrocardia (switching the heart to the sides).

My parents knew then that it would not be possible to heal my heart. But there is a way to make it work in spite of one ventricle and give me a chance to live a normal life. There are two palliative surgeries, by the time I reach preschool age, which will allow my blood circulation to be changed, so as to help half of my heart as much as possible, and on the other hand, make the oxygenation of my blood allow me to function normally. I knew the term “saturation” before it became fashionable by the coronavirus. My daily saturation is between 82 and 87%. After these surgeries everything will be in God’s hands, because no one can predict my life expectancy or postoperative complications because, simply put, I live with only one ventricle of the heart.

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I’m fine now. I am a happy boy, I like to laugh, play with my older sister, and watch cartoons on TV and on the phone. Unfortunately, I can’t run for too long or cover longer distances. It is sometimes difficult to play, but I can always ask my parents for help. I learned to speak well very quickly. I also have a very good memory and I like “nursery rhymes”. I can repeat the text of a book after hearing it only once. Fortunately, I do not remember the times when I was close to death, nor do I understand what awaits me … Although I do know that I have a sick heart.

I was born in Warsaw, in a hospital at Karowa Street. They have experience with the birth of children like me there. They took me straight to the incubator, but some time later a certain professor made a fuss and said to get me out of there. Finally, I could feel my mother’s touch … I was then baptized with water because no one knew what my future fate would be.

Soon after I left the incubator they put me back in it and then I finally went “eeeee oooo eeee oooo” by ambulance to the Children’s Memorial Health Institute. When my parents got there I was already in the cardiology department with which I would become a good friend.

My parents were concerned that I drank little milk from the bottle, but the doctors kept telling them to remain calm. It was long debated about whether or not I should undergo Pulmonary Artery Banding operation. Ultimately they decided it would be a good idea. My parents never talk about that day, but it was definitely a long one. So I also spent some time in the cardiac surgery department. Earlier, I underwent cardiac catheterization and I had to stay a little longer in the Intensive Care Unit (ICU), where it was reportedly a bit worse once … As the doctor assessed – my condition was unstable, whatever that meant.

After many days, at the end of March 2019, I left the Children’s Health Center and went to my home in Murowana Goślina. Now I love driving, but then, I cried the whole way home.

In June 2019 I came back for a week to the cardiology department for heart control and catheterization. It was then concluded that the first stage of treatment – the Glenn Procedure – should already be in the fall. I was signed up for October and discharged home. During the holidays I was able to spend 3 days at the Baltic Sea with my parents, sister, and aunt. My Parents say these were the only three days they had off that year…strange.

In the fall of 2019, after many phone calls to the Children’s Memorial Health Institute, it was established that I was to come for surgery in November. My parents packed us up again, along with my 2-year-old sister. All in all, it’s nice that I didn’t have to go there alone. They never mention the event but I know they were prepared for me to stay there until December. However, despite the fact that the operation was very serious and long, as they say, this time I did not stay in the ICU longer than necessary and I quickly recovered.

In the meantime, I was sick often, and I had pneumonia thanks to dehydration, because I did not want to drink. So I visited the Admission Room and the cardiology department at the University Hospital in Poznań. Oh, and I broke my leg when I fell off a kitchen stool. But I didn’t like the cast. Eventually I took it off myself, twice, and the doctor said the second time that I didn’t have to wear it anymore. And Grandpa built a safer kitchen stool for me …

The year 2020 passed quietly. Total isolation was good for me because I stopped getting sick and as soon as I turned 2 in January 2021, I started talking. And if I was going to talk, I was going to do it in complete sentences with perfect grammar.

In February 2021 I met my cardiologist from Poznań. In March 2021 I also visited the Children’s Health Center again, and two weeks later, Krakow. Doctor Bartłomiej from Poznań stated that the last possible stage of treatment – the Fontan procedure – should be completed before I am 3 years old. In Warsaw they said that I should go through it a year or two later. So my parents decided that they would visit Prof. Edward Malec, who runs the Cardiac Surgery Clinic at the University Clinic in Münster, Germany (near the Netherlands). He agreed with the Doctor from Poznań, but most importantly said that he could perform this operation in a different way – without turning off my heart, i.e. the external heart-lung machine, which changes a lot. He has done over 1000 such operations and some of his patients have even finished their Master’s Degrees …

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My parents said that the operation under the supervision of Prof. Edward is the best option for me. But since the Clinic is far away, in another country, unfortunately the operation costs a lot of money and my parents have to turn to others – their closer and more distant families, their friends and acquaintances, and to you – complete strangers. It’s complicated, but I believe it will work.

On April 16, I was informed that I managed to qualify for an operation at the Clinic in Münster. The cost of the operation in Germany is EUR 39,700 and its date depends on when the funds are raised.

I am asking you to put a coin into my piggy bank. Other children collect for lollipops or toys – I collect for my life.

Visit and like my profile on the Facebook:
https://www.facebook.com/leonbejma

Thanks to everyone interested in my story and willing to help me. Thank you for your spiritual and material support. “I am a little lion… ROAR!”

Qualification and valuation of surgery with prof. Malec:
https://www.leonbejma.pl/wp-content/uploads/2021/04/kwalifikacja-mnuster.jpg

Hospital discharge from the last operation:
https://www.leonbejma.pl/wp-content/uploads/2021/04/wypis-ze-szpitala-2.jpg

The main disadvantages of my heart:
Hypoplastic Left Heart Syndrome (HLHS): https://kidshealth.org/en/parents/hypoplastic-heart.html?ref=search
Double inlet left ventricle: https://medlineplus.gov/ency/article/007327.htm
Transposition of the great arteries: https://www.mayoclinic.org/diseases-conditions/transposition-of-the-great-arteries/symptoms-causes/syc-20350589;
Dextrocardia: https://www.healthline.com/health/dextrocardia


Operations:
The Fontan Procedure: https://kidshealth.org/en/parents/fontan.html – the operation that awaits me and for which I am collecting fundsi;
The Glenn Procedure: https://kidshealth.org/en/parents/glenn.html – surgery that I underwent in November 2019 at CHC in Warsaw;
Pulmonary Artery Banding: https://emedicine.medscape.com/article/905353-overview – surgery I underwent in March 2019;
Cardiac Catheterization: https://kidshealth.org/en/teens/cardiac-catheter.html?ref=search – a procedure that I underwent several times

Leon is under the care of the Children’s Heart Foundation:
https://www.sercedziecka.org.pl/potrzebuja-pomocy/8630-bejma-leon/