Friday, January 16, 2009
This was written on one of the Italian forums:
"I was recently visited by Audiologists-ENTs in three different public hospitals in three different regions of Italy.
My audiometric exams resulted the same in all three visits, but only one ENT suggested that I consider a cochlear implant.This doctor asked me why I had never been advised or informed of the cochlear implant. I had no idea how to respond to that question..."
Christina (pregnant, emotional and very intelligent) wrote this in her post:
...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?
Knowing what I know now, Christian should've never have passed any portion of any screens in the hospital, or any OAEs that were ever done in any office. It wasn't until we FINALLY got to Hopkins that we got any answers. It wasn't until we got to Hopkins that we were looked in the eye and finally told what we always knew--that our son was Deaf.
A mother on an Italian Forum whose daughter was just recently bilaterally implanted, asked the question, "Could someone whose child has been implanted with MXM Neurelec implants please give me some feedback on that particular brand?"
So, of course I asked for information from my support groups: MXM has not been FDA approved and is not available in the USA.
In the USA parents ask questions and DEMAND answers. Thanks to well-publicized cases of medical negligence, parents know to ask questions. Parents come armed and dangerous and Doctors MUST be informed and knowledgable. It is a rare case that a doctor admits to not being an expert in professional material.
"So here I am. It's been 2 years since Christian was born. 2 years since we had that first test in the hospital with the red note and the smiley bear. And even though it's been 2 years, I'm still FURIOUS over how everything happened (or didn't). I've learned to control my anger about Christian's actual hearing loss. I've learned to see past it. However, on days like today, when I revisit the first part of our journey with him, I get so angry. And I think I always will."
I can understand her anger. My American pediatrician never listened to my concerns, he called me neurotic. To get over my anger, I gave him a copy of RALLY CAPS and told him to pass it on to the next family with a deaf child. He tried to make some excuse regarding the fact that there was no Newborn Hearing Screening when Jordan was born. I told him, "I know, make sure you listen to a worried parent the next time she expresses her concerns." And I went on my way back to Italy.
As I have said a thousand times, I have been exceptionally fortunate to have found qualified and sensitive doctors who not only listen to me, but who are sincere when they cannot answer my questions. This is a rarity. Doctors here in Italy have a patient load of over 500 children, they can't possibly know your child as well as you do. You are a PARENT...they are only doctors.
I do my research and I ask the questions that I want answered...do you?