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Personal Experience

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A special child and the Leigh syndrome

Language: English
Country: Italy
Typology: health care professionals
I am Laura, a health care operator working at the Cooperativa PG Frassati in Turin. I work as a home carer in the area of Settimo Torinese. Many years have passed since, for the first time, I entered the house of a special child, suffering from the Leigh syndrome. I remember that first time: I felt a little awkward, but I never hid my emotions to his parents, especially his mother, who was always present when I was there and spent almost all the day with her child. I have always believed that sincerity and spontaneity are good components for a relationship between people. My task was to help his mother with the hygienic care of the child, whose life was dependent on a gastrostomy and a tracheotomy tube (we had also to take into account any type of infections that could arise). For this reason, both in winter and in summer there were always 25°C approximately in his room. At the beginning, I helped to carry out his personal hygiene routine on the bed, starting from the tummy to the feet, then the hair and finally the bust. When I shampooed his hair and rubbed his little head, he used to relax a lot, his face even changed expression. His mother and I have always believed he liked it very much. When she started to have full confidence in me, his mother told me she would like to bath him. But, how could we make it possible? We bought a tub and put it on the bed, then we came and went to the bath to fill it with water. During this operation, the child used to wait in his stroller. In the water, all his muscles relaxed, and we could have him raise and open his legs. Water actually transformed him. And his face was the mirror of this change. It was stretched and relaxed. Meanwhile, time passed and our angel grew up. Until one day the tub became too small for him. So I proposed to his mom we should replace the shower with a bathtub. No sooner said than done. Certainly, had we told someone about all this, they would have said we were crazy. Moving a child dependent on a respirator from his room to the bathroom… Over the years, I got to know and started to love “boccucia a cuoricino” (heart-shaped lips), I used to call him this way, because his lips had the shape of a heart. He loved water and, with a little bit of presumption, I dare say he knew my hands. This was the way we used to communicate: I rubbed him, especially his head, and he relaxed. He could recognize people’s hands because, if they were not hands he knew, he froze. He could perceive everything only by touch. The Leigh syndrome or subacute necrotizing encephalopathy is a disorder that usually affects infants and is characterized by lactic acidosis, interruption of the psychomotor development, feeding problems, convulsions, extraocular palsy and hypotonic weakness. The children affected usually die within one or two years after their birth due to the destruction of their brain tissue and it is hereditary in most cases. In simple words, this special child was deaf, blind and mute, he breathed through a machine and was fed by a PEG tube. Finally, the bathroom was completed. Together with his mother, we had studied the details for the child’s displacement so that he would not feel cold once he left the bath. The first two, three baths worked as tests. After some changes, we arrived at what was the best possible condition. First of all, the child was placed on his stroller. Then, I made the bed while his mum filled the tank. Then, we went to the bathroom with our machinery. We took the child: I raised him from the back while his mother took him from the feet and we put him down in the tub with care. From that moment onwards, it was my task to care for him. His mum was ready in case she had to suck liquid in, because the bath made him produce a lot of saliva. When I moved his legs and his arms, he seemed to fall into a deep sleep. A bath used to last for about twenty minutes. Then, in the same way in which we had put him in the tub, we took him out of it and we placed him again on his stroller. His mother dried his hair while I rubbed his body by using oil. He was dressed and than taken again to his room and put in his bed. Seven years and eleven months went by. They say that this disease leads to death within the second year of life. This angel was lucky to have two exceptional parents, who always preferred to take care of him at home, except for extreme cases. I have always believed that great love is what keeps you alive despite any terrible disease. Otherwise a little human being could not withstand all the things that this angel endured. Then, last year one day at the end of November he passed away. That night I dreamed of him. He was running and had a beautiful smile. At last, he had been freed from a body that held him prisoner.

Date: 11/11/2013

Posted by Rimas (Lithuania)

It is very sad that young children get sick of such diseases

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