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When your life just stops for a moment

In December 2011 my life just stopped for a short while and when it continued everything was different. From one minute to the other.

I have very detailed memories regarding that moment. I went to the doctor in the morning – full of anticipation. I was 6 month pregnant. After the visit at the doctor I planned to do my Christmas shopping. I didn’t know at that moment that Christmas would be canceled that year and that nothing would be the same as before anymore. I was still in my old world in which everything was okay.

At the latest when the doctor went out to get a colleague I felt that something was not right. In the beginning I still thought that it just might be a 6th finger or that one ear might be a little bit too big. „You should think about an abortion because your child wont be viable“. For a moment I thought that I did not understand the doctor correctly because we were talking in French (I still lived in Brussels). But I did get him right. At that minute my life just stopped for a moment. My child wont be healthy? I was always beyond doubt that my child will be in good shape and healthy. Everybody gets healthy children. I did not drink neither did I smoke and I am healthy. These were my first thoughts. Your child just can‘t be sick, that is not possible. Now I am thinking that that was pretentious to think. Now I know how thankful you have to be if you expect an healthy child.

Abortion. I left the doctor that day with that advice. I went home, to my apartment in which the baby room was already fully furnished. The doctor just gave me some broken bits of information: left half of the heart, deformation of the heart, too big right half of the heart.I sat down at the computer and did some research myself. I shortly got Hypoplastic Left Heart Syndrome (HLHS) as an answer.  One week later (7 days, 168 hours, 10080 minutes) I had an appointment at the hospital and my suspicion was correct: Hypoplastic Left Heart Syndrome (HLHS), 5% chance of survival. I left the hospital with that result and again the advice of abortion.

Abortion. That was never an option for me. I did not even think about it for one minute. I just couldn’t image it. With the final diagnosis I sat down again at the computer and looked for hospitals which were able to treat that heart disease. The hospital in Kiel was my first choice and I made an appointment right away. In Kiel my hopes went up again because they could operate that kind of heart disease. Since I still lived in Brussels and I was insured in Belgium I had to organise a few things so that my unborn child could get treatment in another country, in Germany. When I received the acceptance letter it felt like a stone had been fallen from my heart. It helped me in the beginning to organize these things because it distracted me for a while and I had to function. I knew that our  journey wouldn’t be easy and that some operations were waiting for us but there was hope. Hope. I really learned to appreciate that word during that time. 

I had hope when I bought the first setting of clothes and the first music box for Evan that he could wear them and listen to it. Every morning I woke up with hope and every night I went to bed with hope.

When I was asked:“Boy or Girl? Ah, it doesn’t matter. Main thing is that the baby is healthy“, I started crying immediately. After a while I just nodded and kept my thoughts to myself. To be pregnant and not knowing if you are able to hold your baby alive in your arms is just indescribable. As a mother you have so many wishes and hopes for your unborn child. Every day I begged, plead and prayed that Evan shall live. Fear was next to hope my permanent companion at that time. 

But I learned something else during that time: Humbleness. Humbleness for life. I have learned that it is not self-evident to have an healthy child and I also learned that not all parents get healthy children – as I was assuming before. During Evan’s hospital stay I lived in the Ronald McDonald Haus Kiel where I met a lot of parents who shared the same destiny as I did. The Ronald McDonald Haus became a home away from home during that time and the conversations with other concerned parents helped me and bolstered me up. 

If I could turn back the time I would do everything exactly the way I did before. Every day when I look into Evan’s eyes and see the joy and living will I know that it was worth fighting for. Evan lives up for his name: Little brave warrior

The heart must submit itself courageously
to life’s call without a hint of grief,
A magic dwells in each beginning,
protecting us, telling us how to live.
(Hermann Hesse, Steps).

Dieser Eintrag wurde veröffentlicht in: English blog articles


Mein Sohn ist 5 Jahre alt und ist mit einem schweren Herzfehler, HLHS, auf die Welt gekommen. Mit 3 Jahren haben wir die Diagnose frühkindlicher Autismus erhalten. Auf diesen Seiten möchte ich etwas aus unserem Leben, seinen Therapien und unserem Alltag erzählen, der nicht immer leicht aber dafür auch nie langweilig ist. Mein Sohn und ich lieben das Leben, denn das Leben ist schön!

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