Lifelong Learning Programme

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Personal Experience

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Our child Chiara

Language: English
Country: Italy
Typology: patients and relatives
Chiara was born on December 6, 2010 and she is the sister of Elena who was four and a half years old at that time. We are her parents, Sandra and Luca, and we tried to have a second kid twice, but we had two miscarriages. Chiara was born at 10.00 a.m. and I, her father, saw her passing through the operating room to the nursery. The midwife told me: "Everything is ok, you can go and wait for your wife in the ward". Like a good boy, I went to the ward and, while I was waiting for Sandra, I sent the news of Chiara’s birth to all our relatives and friends. At 4 p.m., I returned home to take my mother-in-law and my sister-in-law to see Chiara. But, at 6 p.m., Sandra called me and told me that Chiara was in intensive care. Since 6 p.m. of December 6, our life has changed: the first diagnoses were wet lung and apnoeas and, only after 4 days, doctors understood and informed us that Chiara could not suck nor swallow. What had happened? The opposite situation to the joy of birth; although our faith helped us, we were deeply affected. We remained in hospital until March 18. The most difficult thing was dealing with doctors. Doctors have their own vocabulary and their own training; for people like us it is nothing but easy. We had just found someone who knew about that stuff and knew us as well, when the staff of the home care service of Settimo of the ASL (Local Health Authority) to4 came to see us in the hospital to prepare Chiara to get out from there. The ADI and Paediatrics management and staff were wonderful: as soon as we arrived at home, they came to see us and, since the beginning, they made us feel their warmth and closeness. In these cases, the most important thing is KNOWING THAT THERE IS ALWAYS SOMEONE WHO CAN HELP YOU, both on the personal and medical side. We stayed at home only 1 month, but the ADI always assisted us even when we were in hospital: from April 18 to July 18. Since July 18, we have stayed at home and the ADI has always assisted us not only through home visits: they help us on the phone, at any time. I remember some examples of maximum cooperation with the ADI: in April, Chiara’s PEG blocked, in an hour we had an ambulance equipped with suction driving us to the Regina Margherita. Another example is the cooperation between all the operators: Speech Therapist, physiotherapist, neuropsychiatrist and AD during the meeting on Chiara’s case, in which Sandra was present. Today Chiara continues to have sucking problems and swallowing difficulties and she is a PEG bearer. For this reason, she has been granted the Law n. 104 and she is in a condition of severely disability. For this reason, I must also thank the organization of social assistants at the Regina Margherita who immediately helped us by explaining why they were there, the terminology that is used in cases in which this law is applied, and performed all the bureaucracy relieving us completely of all procedures. Social services continue to assist us through the ADI. We knew them as soon as we arrived at home and they provided us with a first series of services. They have recently assisted us for the understanding of the Law n. 104 for the purposes of the extension of optional maternity. Today we still do not know how Chiara’s future will be and when she will be able to remove the PEG. We, as parents, have learned to live "the day", and it has been very difficult. Day after day we live improvements and sometimes recessions in Chiara’s health, with doubts, uncertainties and hopes. So, day after day, Chiara is growing and becoming stronger and stronger. This way, we have found a sort of balance that makes us live Chiara’s situation in a rather serene way. In this situation, a great drive to go ahead has been given to us by our small child Elena. Elena has been our relief valve, because she reminds us of "normal life".

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