Tuscany... In the Clutch

 

Okay, here's the story behind the story:

I have been psychotic for the past seven months because I have been struggling to reach an objective: Pediatric Courses on Newborn Hearing Screening and Deafness for the Region of Tuscany.

It all began just after the NHS 2008 conference in Cernobbio. I went surfing the net regarding Newborn Hearing Screening and found this study in the journal Pediatrics:

Primary Care Physicians' Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening
(Mary Pat Moeller, PhD, Karl R. White, PhD and Lenore Shisler, MS).

I approached my pediatrician Dr. Giovanni Lenzi of Grosseto who also happens to be the Secretary of the FIMP (Italian Pediatric Federation)Grosseto of the Tuscan Region. He found the questionnaire interesting, so Luca helped me translate it and Dr. Lenzi adapted it to meet Tuscan standards.

It just so happened that my Cochlear Implant Surgeon, Professor Stefano Berrettini of Pisa, had just had his Guidelines for NHS passed by the Region of Tuscany, so we attached his guidelines for screening to our questionnaire and Dr. Lenzi distributed it at a Regional Conference where 58 pediatricians out of 180 attending completed the q.- 30 % Note: Each pediatrician has 1000 children in care.

The results indicated, without going into detail because I'm not really sure that I can, that 1% of Pediatricians surveyed felt adequately prepared to handle a newly diagnosed deaf child. Based on our study, the President has granted us a 1 hour and a half Satellite Symposium at the National Conference to be held in September.

But more importantly...

The Tuscan Region just approved courses on Newborn Hearing Screening for pediatricians, so that we will be able to provide the necessary information which will enable pediatricians to meet the needs of the families.

So that this:

Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?

...does not happen to another mother.

It has been an exhausting seven months of battles, tug-o-wars, insisting, and demanding- but it has been well worth it.

I would like to add that just when you think if you never see another doctor the rest of your life - that would be really okay- a miracle occurs.

My most humble thanks to Professor Ferdi Grandori, Leeanne and Janet from Hands and Voices, Ann from Aussie Deaf Kids and aboveall, Prof. Karl White for immeasurable acts of kindness and words of encouragement in moments of desperation.

My endless thanks to Dr. Lenzi and Prof. Berrettini for helping me reach this objective.

But aboveall, thank you Luca for dealing with my moodswings, last minute crises, translation demands and for being the best father in the world in absolute.

*Wiping Sweat and SMILING!!!!!!!!!!!!!!!!!*