2023-10-06 17:54:05
It was December 11, 1998, less than 15 days before Christmas. A mother holds her baby in her arms after breastfeeding her. It’s late evening. In order not to wake her, she gently places her in the crib on her stomach, without turning her. “Instinctively I had always placed my daughters on their stomachs, but not that night”, Allegra tells time.news Salute today. “Around midnight I wake up. Usually there was night feeding and the baby hadn’t claimed her yet. I go to check. She was there, like a doll, soft and abandoned. Luckily my husband was at home. He was working abroad a lot at the time. We tried to resuscitate her, he had taken a first aid course, but he immediately realized that there was nothing to be done. My Anita was no longer there.” Thus begins the painful journey of Allegra Bonomi, a mother who had to deal with the unexpected death of her little girl.
A drama similar to what other parents in Italy are experiencing now. The latest case is a 3-month-old baby found unconscious in his cot by mum and dad in Montebelluna (Treviso) at night, local media report. The little boy was also resuscitated and urgently transferred to hospital, but his condition was critical and he didn’t make it. The causes of cardiac arrest will obviously need to be ascertained. Just a few days earlier, again in the province of Treviso, an 11-month-old baby had been found lifeless in the nursery room where he slept. “Anita was very well, she had all the perfect parameters”, recalls Allegra, looking back. What happened to her can be explained with an acronym: Sids, Sudden Infant Death Syndrome. Death in her cot took a daughter from her and Allegra today, and for years now, has been asking that her families like hers be able to have access to the same support and the same protocols from North to South.
It is a topic he deals with as president of the association that brings together and supports parents who have lived this experience: Seeds for Sids, an organization founded more than 30 years ago by a father, the diplomat Pietro Sebastiani, who had also lost he as well as his daughter in 1991. The association is currently hosting the honors in Florence, in collaboration with the Meyer Foundation, at the International Conference dedicated to cot death and perinatal death of the Ispid (International Society for the study and prevention of Perinatal and Infant Death), and kicks off the Baby Loss Awareness Week, a week of awareness on perinatal bereavement, symbolically lighting up the Innocenti hospital.
It’s difficult to find the words to retrace moments like this: “For me it was a cold shower – says Allegra – The little girl was 42 days old. The 118 rescuers arrived at the house, they also tried to resuscitate her, but then they could only see that she was deceased. After them also the carabinieri, who 118 must alert. By now it was 3 in the morning. The two soldiers, two good guys, understood immediately. That evening I also spoke to the magistrate, who opened and closed our practice immediately. And then we had to decide on the autopsy. Luckily we decided to do it. I say luckily because it is important then, also for the mourning process.”
Today, 25 years have passed since that December 11th, Allegra knows what to say to a mother who finds herself living the same nightmare. “I would tell her: now it’s as if you were in the midst of the rubble of an earthquake, everything around you is destroyed. But you have to get up and start walking. You will walk and you will fall. You will get up, you will walk and you will fall, until at a certain point you will start even to run. Because you can do it, even if with difficulty, you can even survive these great pains.” But it is important to have a support network, Allegra underlines, “and at the moment in Italy there is a lack of uniformity at a national level. We have virtuous Regions that have created specific protocols and have already systematized and organized a service within the path of these families of support which must continue afterwards, for example when another child is born. In fact, there is also the issue of the next sibling, who must be monitored and controlled”.
Allegra, for example, had another child, after Anita: “I was in contact with specialized reference centers who gave me a home monitor to check the child’s cardiorespiratory parameters, saturation. Things that allowed me to think that he was well and also to sleep at night.” Regarding the Sids, a fixed point on which the president of the association emphasizes is that of the autopsy: “Unfortunately, parents often don’t want it, the health workers indulge them and then unanswered questions remain which become burdensome over time. For us the outcome was Sids. They are defined as white deaths, a diagnosis by exclusion because there is nothing from a medico-legal and anatomopathological point of view”.
At the time Allegra already had an older daughter and no one had talked to her about safe sleeping rules or the risk of Sids. “In pre-natal courses they glossed over the topic, but it was already being talked about in the US in 1994”, she reflects. Today you know well the value of raising awareness. “We need to carry out campaigns at a national level – he urges – the media must do their part. And we must also consider the foreign population. We have produced brochures in 8 other languages so that operators have material for these families too. And then it takes a will at a national level to disseminate now well-established rules in a widespread manner”, which the association has also put together on a website (nannasicura.it). “Where campaigns have been carried out, cases have been reduced by more than half”, she assures.
How can you get out of such a drama? For Allegra, a key was “sharing – she says – An expert directed me to the only association that then existed in Italy on these issues. For me and my husband it was a bit of a journey of hope, desperate as we were, incredulous , tired by everything, by sorrow, by managing the eldest daughter who was 2 years old, by relationships with people, who don’t know how to console you and sometimes avoid you”. Allegra thus met Ada Macchiarini, president of the association at the time, who had also lost her son Giovanni a few years earlier. “I found myself in front of a beautiful woman. It was clear that she had survived. And then I said to myself: if she did it, I can do it too.”
Then, he continues, “one tries in one’s own way to find strategies. In my experience it helps to meet other parents who have gone through or are going through the same experience. Because in those moments one thinks they’ve gone crazy, that they’re doing strange things, in reality these are things we have all done: blaming ourselves, obsessively retracing all the days and hours before death, carrying out forms of repression such as throwing ourselves into work, not talking about the topic. Even targeted psychotherapy, with trained professionals, to In my opinion it is very useful, especially in the early stages.” And then, he concludes, “we need to try to make sense of what happens. I found my meaning in saying that I don’t want it to happen to anyone else, ever again”. And today he dedicates himself to this, with the association’s board of directors and parents “who are many: we have more than 400 members”.
NATIONAL PROTOCOL AT STALL – “This year, Italy is hosting the first post-pandemic conference of the International Society for the Study and Prevention of Perinatal and Infant Death. The Palazzo dei Congressi in Florence is currently bringing together the world’s leading Sids experts, sudden infant death syndrome, what we usually call ‘cot death’. It is a relevant opportunity to bring the attention of the public debate back to the approximately 250 families affected every year in our country by this terrible loss”. This is an estimate, “because even today there is no national register of these deaths”. This is explained by Gaetano Bulfamante, anatomopathologist, member of a working group of the Ministry of Health dedicated to these issues.
For the expert, this is an opportunity to point out “the stalemate of almost 10 years for a national protocol that would allow us to improve diagnoses, provide support to families, facilitate the collection of reliable data, contribute to prevention and scientific research” on Sids. “Back in February 2006 – he recalls – the Italian Parliament approved a bill with the aim of giving a boost to the creation of an all-encompassing national project that would promote measures to reduce the SIDS risk and provide adequate assistance and psychological support to families affected. On 7 October 2014 the Ministry of Health had approved by decree the diagnostic protocols in cases of sudden infant death and unexpected fetal death, however postponing to the State-Regions Conference the approval of the operational protocol on the territory that the group of task he had proposed”.
A fundamental step, as it defined important aspects such as the role of the emergency services, the pathologist and the medical examiner, the operational relationships between the judiciary and the health service, and so on. “This operational protocol, indispensable for implementing the two approved diagnostic protocols, repeatedly discussed in the Health Commission, has never been approved, since unanimity has never been reached between the Regions”, underlines Bulfamante, who also speaks about this on the occasion of the Conference on Sids.
Hence comes “the stalemate that has existed for almost 9 years on the national territory, with the sole exception of the Liguria and Tuscany Regions which have organized a modus operandi consistent with the indications of the protocols in question”. For the rest, Bulfamante continues, “we see seriously uneven behavior and, almost always, not even adhering to what has already been defined in the Official Journal”.
The completion of the approval and implementation process of the protocols is important for several reasons, he underlines: “It helps to ensure that diagnostic procedures are uniform throughout the country, reducing the risk of errors or conflicting interpretations, but above all it guarantees that the family is struck by the drama of a perinatal or cot death can immediately receive adequate and structured support. A standardized diagnosis of SIDS would also result in a collection of reliable, coherent and comparable epidemiological data between the different territorial areas and in the different years” .
“This – concludes Bulfamante – would represent an essential asset for identifying trends, evaluating the effectiveness of preventive measures, conducting scientific research and launching training initiatives for parents and operators in an organic way throughout Italy, useful for spreading good practices even further the safe positioning of newborns during sleep and to reduce known risk factors”. (by Lucia Scopelliti)
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