I woke up at 6 am and called my friend Francesca who's up at 5 to open the coffee bar two blocks from my house. She sells newspapers. She was busy. She called me back fifteen minutes later and read me the article in the Italian National Newspaper equivalent of the New York Times. I couldn't go back to sleep. I jumped out of bed, threw my coat over my pjs- the Paul Frank variety with monkeys all over the pants, threw on a pair of boots and walked the two blocks.
I sat myself right down -newspaper in hand- amidst the early Sunday morning risers- hunters, wild boar hunters. With my back to them all, I drank my cappuccino, read and started screaming. I vaguely overheard my friend telling the hunters not to worry that I wasn't crazy.
Here it is: Article by Ruggiero Corcella in Corriere della Sera
Hearing: Families and Medical Professionals request the screening for all
Only 6 out of 10 newborns have access to the test that will indicate a potential hearing loss
Early diagnosis is fundamental
"Newborn Hearing Screening must be performed in every single birthing hospital in Italy". Jodi Cutler Del Dottore explains it clearly. Cutler, a dynamic (he actually wrote dynamic) American from Baltimore who has been living in Tuscany for 13 years, is the representative of a parent movement and the creator of a blog (daigenitoriaigenitori.blogspot.com) and forum on facebook with a large following. Her son Jordan suffers from profound bilateral sensorineural deafness since birth, which he has overcome thanks to a timely diagnosis and a cochlear implant which he received in Italy. Jodi, like the majority of families with deaf children, is fighting to ensure that newborn hearing screening becomes mandatory throughout Italy.
The reason? The earlier the diagnosis, the sooner the treatment and habilitation may begin. In such a way, the percentage of success in the general development and language of the child increases.
At an international level the general consensus agrees regarding the necessity of universal newborn hearing screening programs, that it should not be limited to children at risk, and that it should be performed within three to four months of age. Even in Italy, the numbers confirm the need. "1-2 children per thousand are born with a hearing loss- says Roberto Albera, director of Audiology at the Molinette Hospital of Torino- Each year 200 children are born with a form of profound deafness." Despite the approximately 100 thousand children with hearing loss in our country, the diagnosis of deafness still occurs extremely late- between 22 and 28 months.
The data collected by the Institute of Social Affairs of Rome reveals that only 6 children of 10 immediately undergo the screening. "When we began our data collection in 2003, only 3 out of 10 underwent the screening- says Luciano Bubbico, Otorino of the Department of Biomedical Sciences of the Ias- but there still remains a strong discrepancy between the hospitals of the North, where the screening is diffused, those of Central Italy with many problems, and those of the South that are practically non-practicing."
At the end of 2010, remaining deaf, or treating the deafness and offering the possibility of access to language still depends on geographical factors. The Italian Pediatric Federation has understood this and in collaboration with the Italian Audiology Society and Parent Associations, has created its own Audiology Network. "Our goal is to inform and educate our colleagues- explains Giovanni Lenzi, Pediatric Chair of the Project- so that they incorporate the screening and have the tools to be able to evaluate the auditory development stages of the children".
In general, a clear picture is missing that mandates the initial screening, an entire network of second level coverage, regional Centers of reference and a National registry."In a civilized country, it is essential- emphasizes Alessandro Martini, audiologist of the University of Padova. -It is also necessary in order to understand if in the various regions more important epidemiological factors exist which may enable us to intervene at the level of prevention." Many adopt the National guidelines for the screening, which are present in the "Essential Levels of Assistance", frozen for over a year for problems of finanical coverage. To un-block the guidelines, we hope they will surpass the Essential Levels of Assistance to directly pass the Screening into the new National Healthcare Plan 2010-2012 that is currently being discussed.
Screening yes, but not screening alone: The ENS (equivalent of NAD, and I have no idea how they entered this article) also complains about the lack of information for the families regarding all of the didactic and rehabilitative possibilities for a deaf child.
3 comments:
Whoo hoo!
(I still read your blog :p)
As I began reading this post I'm thinkin "OH NO!" Not another f*#@ing hurdle for you!!!! As I read on I literally started smiling from ear to ear and my head started buzzing! The buzzing is still going as I type this...I AM SO GODDAMN HAPPY FOR YOU!!!! You deserve every article, soundbite and "dynamic" word written about you. Congratulations hometown girl. I'm kvelling for you;)
smiling ear to ear ... YOU.GO.GIRL! CHEERS to you and all your hard work in making it happen and advocating for so many families out there whose lives this will affect FOREVER.
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