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Personal Experience

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We had no certainties

Lorenzo
Language: English
Country: Italy
Typology: patients and relatives
Text:
I am Lorenzo’s mother, he is a fifteen-year-old boy. It is difficult for me to speak about the period in which my son was born, because of the quantity of things happened and because of the strong emotions that these events provoked in me. Lorenzo today is a nice guy, he is sociable, keen on football, and "techno" music; he dreams of a future as disk jockey, surrounded by beautiful girls like those who win "Miss Italia". In short, he is a teenager as many others. When he was born, I had been working in a Service of Child Neuropsychiatry in Turin as physiotherapist for sixteen years. I had faced complex situations on a daily basis, I had taken care of children with health problems in great difficulty, stories of tragic and painful pregnancy and maternity. I would have liked a motherhood that could link me again with the joy of a new life, which was beautiful, shared and natural. Since everything was getting along well with my husband, we planned a home birth. At the eighth month, an unexpected letdown hit us. An ultrasound examination showed that something was wrong: my child had a bilateral hydrothorax. The gynaecologist warned us that Lorenzo could not stay long in that situation. If we did not intervene in a few days, my pregnancy would be interrupted, but, if we performed a caesarean section and then submitted him to intensive care, there were no certainties the child would survive, because they could not know if the lung tissue of Lorenzo would be still able to expand and breathe, or would be too "soaked" and damaged. She asked us to decide what we felt up to doing. We had about twenty minutes. I thought I knew what having a sick child could mean, particularly what being his mother could mean... in a moment, the images of many children I had followed popped into my mind... I felt as if I was falling into an abyss... I also recalled the memory of some mothers I had known during my years of work. They were women I had appreciated because they knew how to love their child as he/she was, fought to give him/her a life, a future. They continued to be women full of interest and qualities. Those people were a lifeline for me. My husband said something deeply important for me: life was worthwhile, even if you were not perfect, beautiful, "at your best". I felt he was really close to me, and I was grateful that he was not afraid. I do not know whether I would make it on my own. So we took our decision and Lorenzo was born the day after. It was "Easter Monday". The gynaecologist who performed the operation gave up her day of rest for us. Shortly after his birth, Lorenzo was brought to the recovery room and I could see him only after seven days. We were in two formally linked hospitals, but they were absolutely disconnected. In those days I depended on my husband’s stories and comments: "He is nice, he is not small, he has a beautiful little face, he is ok and can breathe on his own... they have visited him and then put him in an incubator. They have said we can call the department once a day to have news, and see him three times a week, for twenty minutes!". I thought of the home birth I had dreamt of because I wanted everything to be beautiful, natural, and to hold him immediately in my arms... everything took a turn for the worse... Lorenzo remained a month in the recovery room and another month in the department of premature children at risk. We spent his first year of life more in hospital than at home. The first diagnosis we were given was "not progressive muscular dystrophy"... but, fortunately, the instruments I was provided with, thanks to my job, gave me the strength to go beyond words and to recognize and promote in Lorenzo the capabilities he had. On the one hand, I was lucky to be a physiotherapist, on the other, I was not that lucky. I did not feel frightened by Lorenzo‘s disease, I did not have feelings of guilt. Instead, I saw the organizational aspects of health services from a new point of view. Organizational superficiality and inconsistencies often neutralized and contradicted the purpose that treatment should have. Having been uncritically part of that system of things made me furious with myself and with the "health" system in general. My psychological health was at risk, I felt shattered. When I went to see Lorenzo in the recovery room, for those twenty minutes, three times a week, at our disposal, I could only think that, a few years before, when I worked in that same hospital, I went there all days, I put my hands in incubators, I moved instruments and probes, I turned my small patients over and over again to make them move a little, to place them in comfortable positions. As a parent, I was asked to look at my son through a glass, and not to touch him. I could not believe that a small human being who, up to that moment, had had as a reference point the beat of my heart, my smell, my voice, would find the strength to live even in my total absence. I fell into despair because it seemed to me as if I had left him completely in the hands of the health personnel as we had been forced to do. I knew that in other cities in Italy experiments were carried out against those absurd rigid rules, but we were there. When I got into that room, I tried to understand the real conditions of my child by looking at the instruments to which he was connected, whereas my husband gently knocked on the glass of the incubator, spoke in the tubes connected, sought to provoke reactions in our child and then stressed them and gave them a meaning: "Have you seen? He has moved his eyes under the eyelids, has made a little jump, has tried to turn toward us. He recognizes us, he has heard us… He will survive. He radiates a clear desire to live...". These were the things I used to think about when I was not with my child, rather than the various medical reports. These things gave me hope and strength to go on. Things improved when he was transferred to the Department for Infants at Risk. I could see him all days, one hour through a large glass, and twenty minutes in the room near the incubator. Only one parent at a time. My husband usually gave up his turn, knowing how much I waited for that moment. Then, it was really painful for me to see that Lorenzo was always asleep and little responsive. He was my first son and I did not know that, after the meal, babies fall asleep because their tummy is filled up. Only by chance did I discover that the staff let us come close to our children shortly after the meal, when they too had a short break. In other words, once they had completed their task, they left us to safe keep our dormant children. We were a functional part of the department, but the department did not help us to establish a relationship with our baby… Lorenzo was fed with a nasogastric tube because he could not suck. Once, through the big window, I saw him trembling for the speed with which the nurse injected the milk in the tube. I decided to try to teach him how to suck and, asking all the permissions, I spent those twenty minutes at our disposal rubbing rose honey on his lips, singing all the songs I knew and massaging him gently. Little by little, Lorenzo stack his tongue out and began to suck my finger. I still remember the excitement and happiness I felt while keeping him in my arms and feeding him with the bottle that was the "prize" for many efforts. Lorenzo demonstrated that he could learn, and this gave us so much hope. How many steps forward Lorenzo has made since those days, and we too have made progress with him. He has reached a good personal autonomy, he still has limits in the cognitive and relational fields. Last summer, he was taken to the recovery room again. Due to a bad evolutionary scoliosis, Lorenzo underwent a delicate operation of neuro-orthopaedic surgery, which included 24 hours of hospitalization in the recovery room. The old experiences, once removed, were coming out then, leaving me in a state of anxiety. We prepared everything for the intervention. Lorenzo had brought with him the teddy bear he sleeps with: Pallino. They dressed it as a surgeon and, through this little puppy, they explained to him everything he would see once he was awake in the recovery room. The doctor reassured him that, during surgery, Pallino would watch over him. He asked what he would want to have or see once he was awake. Lorenzo said that he wanted to see us, he wanted Pallino and wanted to know if he had been good. Instead, we were told about the stages of his waking up, as well as the schedule, and they understood that I really needed to see him, and to be sure he was not afraid. During the intervention, they came to inform us about any development, which helped us to keep quiet, and afterwards they reassured us that they would call us shortly after Lorenzo woke up. Several hours after the intervention, after having spoken with the surgeon, they called us. Lorenzo had awoken a few minutes before. Pallino was lying near him. The anaesthesiologist told us: "Ah, you are Lorenzo’s parents, aren’t you? Do you know that I have never had such a good child here?". Lorenzo looked at us, turned to look at a tool blinking near him and, very softly, he asked what it was used for, then he fell asleep again. I thought: "He is ok.". Then, we waited for other four hours until he was quietly transferred to the room. We felt he was in good hands.


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