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Nascere prima del tempo

In Italia sono 36 mila ogni anno i bambini che nascono prematuri. Fondazione Istud e Vivere Onlus hanno realizzato la prima ricerca su scala nazionale per raccontare le storie dei genitori

In Italia ogni anno nascono circa 36 mila bambini prematuri, che hanno bisogno di cure speciali per sopravvivere. 36mila famiglie quasi sempre impreparate di fronte a una nascita prematura che incide profondamente sulla vita personale, di coppia e lavorativa. La prima ricerca italiana di Medicina Narrativa (realizzata da Fondazione Istud in collaborazione con Vivere Onlus Coordinamento Nazionale delle Associazioni per la Neonatologia e con il supporto di AbbVie) ha raccolto su scala nazionalele storie dei genitori di bambini nati prima del tempo che hanno fornito una preziosa testimonianza dell’esperienza vissuta.

«La prematurità è un percorso tutt’oggi poco esplorato»,afferma Martina Bruscagnin, Presidente di Vivere Onlus Coordinamento Nazionale delle Associazioni per la Neonatologia, «che lascia molto spesso la famiglia senza sufficienti informazioni e senza un adeguato sostegno. Il progetto “Nascere prima del tempo, il vissuto delle famiglie con nati prematuri in Italia”, nasce con l’intento di raccogliere, attraverso i racconti di 149 famiglie, gli spunti relativi al vissuto, alle richieste, esigenze, aspettative che emergono lungo il percorso, per individuare gli spazi di intervento più idonei dal punto di vista dell’organizzazione dei servizi e del supporto integrativo per le famiglie».

Dalla ricerca emerge in primo luogo l’imprevedibilità della nascita pretermine. La diagnosi di una gravidanza a rischio si riscontra solo nel 28% dei casi, in particolare viene diagnosticata più frequentemente nei casi di gravidanze gemellari (nel 72% delle nascite gemellari). Il risultato è che per l’87% dei parti pretermine si è trattato di un evento improvviso ed imprevisto che ha richiesto un intervento di emergenza, 8 volte su 10 (78%) con un parto cesareo.

Le strutture che accolgono i bambini prematuri, ovvero le Neonatologie e le Terapie Intensive Neonatali, sono localizzate prevalentemente all’interno della propria Regione di residenza, anche se in quasi il 70% dei casi non nello stesso Comune, ma soprattutto nelle grandi città. Si rilevano inoltre pochi spazi a disposizione per agevolare la permanenza dei genitori, come ad esempio letti, sedie comode e stanze appartate. Durante l’ospedalizzazione prolungata l’accesso al reparto, garantito ai genitori 24 ore su 24, dovrebbe essere un aspetto ineludibile dell’assistenza al nato pretermine. Successivamente alla dimissione, il supporto cala drasticamente: solo nel 10% dei casi viene offerto un supporto qualificato al domicilio.

«Dopo le dimissioni dall’ospedale, è importante che il piccolo sia inserito in un programma di follow-up in grado di guidare il bambino e la sua famiglia, soprattutto in caso di patologie, nel difficile percorso riabilitativo», affermaGiovanni Corsello, Presidente della Società Italiana di Pediatria (SIP). «I bambini nati pretermine, infatti, sono spesso più problematici, in quanto risentono di uno sviluppo incompleto di alcuni sistemi e apparati, come quello respiratorio».

«È quindi di fondamentale importanza evitare che contraggano qualsiasi tipo di infezione», aggiunge Costantino Romagnoli, Presidente della Società Italiana di Neonatologia. «Tra queste, l’infezione da Virus Respiratorio Sinciziale assume particolare rilievo sia per la frequenza che per la gravità. A questo proposito la SIN ha sentito il bisogno di elaborare nuove Raccomandazioni sulla profilassi di questa infezione: in assenza di un vaccino specifico, la profilassi ambientale sommata alla somministrazione di anticorpi specifici anti VRS si è dimostrato l’unico provvedimento efficace. Da oggi poi, grazie all’introduzione di un piano terapeutico, è possibile offrire una nuova opportunità di scelta ai genitori: continuare la profilassi anti VRS in ospedale oppure direttamente a casa, con il supporto di un’assistenza domiciliare qualificata e capillare».

Infine, le narrazioni raccontano lo scenario della vita lavorativa dei genitori. La ripresa del lavoro risulta difficile sia dal punto di vista organizzativo che emotivo. Il 68% delle mamme dichiara impatti significativi sulle attività lavorative: ha dovuto utilizzare le ferie a disposizione, permessi speciali, ha diminuito sensibilmente le attività lavorative o addirittura ha dovuto smettere di lavorare. Molte mamme di bambini prematuri escono dall’ospedale quando il periodo di astensione obbligatoria dal lavoro, conteggiato dalla data del parto, si è già esaurito.

«Per questo l’Associazione Vivere si è fortemente battuta ottenendo degli ottimi risultati. Il 24 giugno è stato pubblicato in Gazzetta Ufficiale il Decreto Legislativo 15 giugno 2015, n. 80, che apporta novità importanti nei casi di parto prematuro o di ricovero del neonato. Il decreto prevede che, in caso di parto anticipato, i giorni non goduti prima del parto si aggiungono al periodo di congedo di maternità dopo il parto, anche oltre i cinque mesi previsti. A questo proposito, riteniamo fondamentale una Circolare ministeriale che disciplini chiaramente questi aspetti del provvedimento, ovvero che il periodo che deve essere aggiunto ai cinque mesi di astensione obbligatoria già previsti vada dalla nascita alla data effettiva d’ingresso del bambino nella casa familiare, coincidente con il periodo di degenza in una struttura pubblica o privata del neonato», conclude Martina Bruscagnin. «Non dimentichiamo, infatti, che l’ingresso del neonato nella casa familiare coincide con il momento in cui i genitori di un bambino nato prematuro hanno, di fatto, il coraggio di appendere fuori dalla propria abitazione il fiocco rosa o azzurro».

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