Lifelong Learning Programme

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Training > Experiences

Personal Experience

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Simone’s story

Language: English
Country: Italy
Typology: patients and relatives
My name is Patrizia. I am 35 years old and I want to tell you about my unique experience as mother. The most beautiful day of my life was when I discovered I was expecting my first and only son. I felt in seventh heaven. I spent a beautiful pregnancy without any problem. It seemed almost a dream. During the nine months of pregnancy, I always talked with my child, I used to caress my belly when he kicked his legs and, to calm him down, I used to sing him carols. We had a very peculiar relation. On 24/12/2003, I began to suffer from small pains, even if Simone’s birth was planned for 30/12/2003. I went with my husband and my mother to the hospital at the Clinica Universitaria in Turin. Shortly after visit, I went into labour. At 6.12 p.m on 24/12/2003 Simone was born, my Angel, precisely on Christmas eve. He was a beautiful child of Kg 3.740, 53 cm tall with a 9/9 APGAR score. The post childbirth course went all well: after a few and happy days, we came back home. Simone was always crying though, even after the meal and especially when we change him the diaper. Initially, we thought it was due to the usual colic that babies have, so we started to go from one hospital to another. We were always told the same things "it is colic", instead I felt deep inside me that Simone had something else. I felt bad because I could perceive his discomfort. I spent day and night with him in my arms, I tried to calm him down in any way, but it was useless, he kept on weeping. A day, when Simone was about a month, I noticed that, when I prepared the milk to give it to him, he did not open his mouth. I was frightened because he had always been hungry so I called my husband and we went to the hospital in Chivasso. After a week of hospitalization, paediatricians diagnosed a reflux problem and, according to them, Simone wept for that reason. When we returned home, Simone got worse and worse: he did not open his mouth to eat and was always sleeping. We ran to the Emergency Room in Chivasso and they hospitalized him again without knowing what was wrong with the child. The following morning, Simone suffered from convulsions and his body stiffened, he was submitted to a resonance and he was diagnosed with an ischaemia to the brain. We immediately went to the Regina Margherita at the CNR (Center for babies at risk) where they put Simone in an incubator on a drip of phenobarbital and cortisone. It seemed a nightmare but, instead, it was reality. I had to leave him, I could see him only at certain times, the world had fallen apart on me, my happiness had lasted so little, I did not know what was happening, doctors told me it was very serious, that Simone was dying and they were doing everything they could. In a moment of crisis, my husband and I decided to have Simone baptized by the chaplain between tears and despair. Despite all this, I felt a voice inside me, murmuring: Simone is strong and you will not lose him. This voice gave me the strength to face all my difficult path. I spent night and day crying, my life was over, I felt my heart had fallen into pieces. After many tests and frequent interventions in the recovery room, we found out that Simone suffered from a degenerative metabolic disease (Leigh syndrome) and that he would no longer breathe autonomously and would be led to a rapid death. Ten months of his life spent in hospital without hope but only despair. At the 11th month, Simone ceased to breathe autonomously and was connected to a life-support system and we brought him home in those conditions. Initially, we thought to leave him in the institute, because taking care of Simone was not simple and would compromise our life. But my husband and I wanted him to stay at home in spite of everything, and thus our adventure started all over again. We have learned to be nurses and doctors at the same time. When he could leave the recovery room, Simone was almost dead, he did not give any signal, he had given in, because he had found himself in a cold environment. Resuscitators had told us that he would die within a year of life, just like that without worrying about the sensitivity of a mother. I shed a lot of tears, but then I said: “That's enough! Now I take the lead!”. I took care of him day and night, without hesitation, I left my job, my life. I have done so only for him, because I felt it was the right thing to do, I am his mother. Day by day, Simone reacted a little more, despite the multiple injuries to his brain, thanks to my immense love, because there is no treatment for this disease. He does not perceive very much, he shakes hands, he makes us understand if he feels bad, if he wants to be turned or if I have to change his diaper. Then, when he has a baby bath, he is happy, and he also makes a little smile. I depend on this, I am well if he is “ok”. How many ugly things I have heard: for example that Simone is a vegetable, but I have always pretended I had not heard and I have continued on my path, that is to love and care for my unlucky little child. We were fully-equipped and two years ago we took Simone to Puglia, where his grandparents live: he must know the place where his parents were born. It was wonderful, all our relatives were moved and we sort of resumed our life. Day by day, I live my life with Simone without thinking about the future, but only about the present and about everything I can give him today. Simone is 6 years old and weighs 20 Kg, he is a big baby with frizzy hair and green eyes. He should have attended the 1st year of elementary school. If I think about this, I feel bad but unfortunately it has gone this way, I can only but hope to be happy with him in another life, if there is one. I hope I will always have the strength and health to do so also because he depends completely on me. My experience as a mother has been only traumatic, I did not have the pleasure to enjoy all the happiness that a healthy child can give. Sometimes I wonder: “What I did to deserve all this, what is the point of all this?”. I have paid dearly my desire to become mother, but, in spite of everything, I know that I have done and will continue to do everything possible for this unfortunate creature and that perhaps, from up there, he has precisely chosen me as his mother and I am honoured by this.

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