Against all expectations

By Sarah RaparoliLex Kleren Switch to German for original article

For parents who are told at birth that their child's life expectancy is low due to a diagnosed disability, a world comes crashing down. The Lëtzebuerger Journal met two families who talk about their experiences and have never lost courage despite a difficult diagnosis.

The average life expectancy of a country can say a lot: medical progress, hygienic standards, environmental influences, social environment. Life expectancy can also be influenced by completely different factors including irregularities that occur at the birth of a child and indicate a disease or disability. Romain is one of them.

Romain was born on March 12, 1990. "There was never really anything that indicated a trisomy", Romain's mother says in retrospect. The docters had a suspicion at birth and they ordered analyses to be done. "We were told that we would know in three days." She describes these three days of uncertainty as a good thing – "the first contact could happen this way. The birth itself is stressful and exciting enough", the mother says.

Three days later, the phone rang. The doctor in charge didn't want to say anything on the phone. "Then you already know that the message will not be good. After that, there were many questions: "How do we organise ourselves? Can we even manage the situation as a couple?" The mother decides to not go back working and to be fully there for her son. "My husband had more difficulty accepting the new situation. The prognosis at the time for people with trisomy was very poor – I was worried." The parents had been told that Romain's life expectancy was lower and that he would have health problems – not more than that.

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