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.
*Pissed off*
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.
Christina wrote:
"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?
20 comments:
Two of my favourite sayings:
1. Information is power
2. The squeaky wheel is the one that gets the oil
Amen, sister...
I think that many parents through these experiences. When my mother told my pediatrician that she was concerned about my hearing, the pediatrician told her that she was just "an overly anxious new mother." That's BS! A mother of a good friend of mine who has a cochlear implant was told the same thing too.
Also, concerning the cochlear implant company, MXM - I know that it's a very reputable company as according to a research studies, only 3% of their implants fail within the first three years.
Just wanted to tell you that I love what you're doing ... you're a great mom and a beautiful woman and a terrific advocate.
Hugs!
My American pediatrician did and said the same thing to me. He told me "there's a big window of language development," and that I needed to relax. Not a good answer to a mother who was concerned that her 17 month old had stopped adding words to her small vocabulary. Then the ENT he referred me to (after I insisted) told me I was overbearing and needed to relax! Next was the pediatric audiologist who told me she couldn't tell if there was a hearing loss after testing her, come back in 2 weeks. At the second visit, she said, "IF she has a hearing loss it is mild." Thank goodness I was smart enough to question that, if it was mild, why didn't she ever answer to her name or add more words at all? The next audiologist we visited (at a school for deaf kids) finally figured it out, she had moderate to severe hearing loss in every frequency in both ears. We had her fitted with hearing aids within 2 weeks, just before her 2nd birthday. What a waste of 6-7 months!
Moral for all parents and caregivers: Go with your gut. If you suspect there may be a problem, don't rest until you are confident in the answers you receive.
Rachel...where are you??? Are you back from your trip around the world??? Could I have a little feedback from that minor excursion!!????
Tiffani...know that the feeling is mutual and kiss that tomboy.
Paula- Yours is the situation I do not understand considering that you have a hearing loss as well. How does a doctor not extensively test your child if you express a concern????? On a serious note, have you sent the video to Vogue? She is such a star...
Love,
Jodi
I think this is a very common experience for parents of Deaf children.
My mother told me that my paternal grandmother suspected that I might be deaf when I was just an infant because I wasn't responding when facing away from her. My aunt, who was studying to become a nurse, put me on the floor and used pots and pans to make noise. I didn't respond. Then she let my parents know of the possibility I might be deaf.
My mother had to go through quite a number of doctors who told her nothing was wrong with me until I was 6 months old. That was when a doctor FINALLY confirmed it. THEN my mother could move on and make decisions on what to do from that point on.
Persistence does pay dividends in this case. Parents do definitely need to listen to their own gut instinct rather than the medical professionals who often know next to nothing, and if necessary, become overbearing.
Some of the most successful Deaf children I have seen often have fighters for parents.
LOL, Jodi! She'd love to be discovered and be an actress/model! :)
Our story gets better near the beginning when I was in the hospital to give birth to her and I had to tell all the doctors and nurses that I was hearing impaired. I had a c-section under general anesthesia and everyone in the room knew because they couldn't talk to me with their masks on since my hearing aids weren't on. Hello, red flags! Mother with hearing loss, maybe this baby should be formally tested with an OAE or an ABR? Not a one thought of it and we didn't know about those tests then. :( The other large hospital one town over tested babies for hearing loss as a matter of course because they had a grant to do them. It burns me up that universal newborn hearing screenings are still not catching many kids.
Shel...I agree, and I have to say that many of the strongest fighters are present on Ci Circle-they always have motivational stories to provide to the group.
Paula,
There was another little girl born the same day as Jordan at a hospital about fifteen miles away, who was screened as part of a study. Jordan's deafness was discovered at eleven months of age, hers on day 1.
*Grrrrrrrrrrrrrrrrrr*
Who knows if I would have moved to Italy had I known?-the US is supposed to be the leader in health care-I probably would never have moved here...life happens for a reason.
Jodi
Jodi & All,
It is important to establish a relationship with *one* pediatrician. While only a few patients (or parents) are hysterical and unreasonably demanding, it is still true that these folks exist. By establishing an ongoing relationship with a single pedi, you can build your credibility with that pedi, so that he or she can trust that you are complaining about significant things.
You would be shoched about the number of visits to peds for things a parent could/should deal with himself. Whether through ignorance or not wanting to be bothered with extra child care duties, a few parents create a huge load for pedis (especially where there is no financial penalty to the parent). Pedis are human like the rest of us and they can become sceptical of all parents. Unfortunate, but true.
David
David, I only had one pediatrician. I interviewed him before I selected him when I was pregnant with my first. My husband and I sat in his office and said, "We are both hearing impaired. We want to make sure we follow this baby carefully." He nodded his head and then did nothing when she was born. As her primary care physician and pediatrician, he should've looked into testing for her in infancy. It was available, but needed to be requested.
After she was diagnosed when she was 24 months old, I told him, "If you have other patients who suspect a hearing loss, please make sure they're tested and give them my phone number. I'd be happy to help them with resources and information." He nodded his head.
Need I say more?
Paula,
Ouch!! (And...Dayumm!) No, you do not need to say anything more.
David
David, perhaps you're a doctor and that's where your viewpoint came from. But mine is as a parent of an unnecessarily late diagnosed child. The pediatrician's failure to offer any assistance resulted in tremendous gaps in her speech and language development which are still apparent in testing today even though she is 13, mainstreamed since 1st grade, a B+ student and in accelerated classes in math and science. It cost us hundreds of thousands of dollars, our family being split up (for 3 years) and incredible amounts of time spent on therapy to get her where she is today. Medical professionals don't always understand that the simple act of ordering a hearing test can save parents and children from the tremendous financial and emotional strains that can last for years.
Before I gave birth to Jenna, I talked my audiologist about having Jenna tested after birth. The hospital did testing after birth and my audie tested Jenna again a week later. It gave me a piece of mind just to know.
Since my hearing loss MIGHT be from birth, I was very concern. I must say I had a fantastic experience with the hostipal and audie.
Jenna is hearing, but I worried for years about hearing loss. My audie did test her hearing again at 6 months and a year. At that time she felt Jenna did not have a hearing loss and told me relax.
I also agree with Naomi, information is power!
Paula,
I agree with you!
I am not offering excuses, but strategies. The whole world is becoming more beaurocratized, with decision making moving farther and farther from the "front lines". Physicians have layers of B'crats demanding justification and documentation for every decision. This is true for pedis in solo practice and even more so for pedis in clinics.
As I have said before, many Hearing do not value the lives of Deaf people. Deaf and HH children have no one other than parents to speak and agitate on their behalf.
Parents, please be aware that all physicians now hear a constant drip of "do less", "do just enough", "spend less". (Combine that with a lawsuit climate that will execute you financially and professionally for not doing *everything*, reasonable or not, and you see why there is a growing shortage of MD's) Parents *must* be informed and must be assertive in appropriate and productive ways.
If your pedi does not listen to you, search until you find one who will!
As I said, Paula, I agree with you,
Savid
Well, that's interesting.
My parents are deaf.
My parents knew my siblings are deaf, (no hearing screenings back then.) yet, when I was born and by the time I was enrolled in Kindergarten, they assumed I was hearing. My hearing side of the family thought I was hearing too! So, imagine the shock when after the first half of my kindergarten year the school nurse contacted my parents and told them that they suspect I have some hearing loss.
Turns out I did! So, my parents thought maybe it was because I came down with a temperature of 105 degree that didn't go away for days. I think I was born this way. Anyway, even though my mom was deaf, she was open with the ideology of this one great teacher of deaf/hoh whose goal was to ensure every hard of hearing kids succeeded in listening and speaking. I'll always be forever indebted to her. But, doctors? LOL, I never trust em. Always ask questions! Always get a second opinion.
Jodi,
I also know some of the strongest fighters who go the ASL or bilingual route, partly because they forge ahead in their choices despite attempts at intimidation by professionals, including medical professionals, who claim signings are detrimental to development of speech or English. The key here is fighting and advocating for yourselves and your children regardless of your ideological bent.
Candy, I share you distrust of the medical professionals, as does many other Deaf people.
Shel
Oh God, I just got home and will respond tomorrow morning. My husband has been making fun of me since we got Brie and generously indicating where she pees and poops so that I can bend down on all fours and clean. Jordan and Sofia scream and laugh every single time Brie pees and they show me exactly where it is. My house has become an arsenal of disinfectant and paper towels.
Tonight...justice prevailed.
Luca just got ready to get in the shower and stepped barefoot in THE SPOT!!
Oh God, it takes so little to make me smile...
Night Night,
Jodi
Ah Jodi, that is what you call karma LOL
Oh Jodi, I am so hormonal these days. But sometimes, the hormones are a good thing, and they help bring me back to reality and make me realize that I have to keep fighting for Christian.
The comment about establishing a relationship with one pediatrician is so true...
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