Sunday, 7 February 2010

What should doctors know about deaf children and their parents...???

Last thursday (4. feb 2010) Jodi (Jodi Michelle Cutler) just came with a request on Facebook... I'll repeat it here for those that can't reach her facebook page..

---------------------------------------------------------------------
I was thankful for five minutes with seven hundred pediatricians. Tuscany has given me three hours...my own three hours to use as I choose to teach 500 pediatricians the parental perspective on newborn hearing screening and deafness. I have created a program of what I want to share, but since you've been with me throughout this entire two year long journey and we've debated, agreed, laughed and hung out-please send me resources. Send me studies, send me anything that has helped your child become the well-rounded, happy, functioning child he/she has become. If you have any youtube videos or websites that you think are important; if you want to send me pix of your kids with cis or hearing aids or signing that I can use on my slides, leave the link in the comments section or email me at jodi@rallycaps.net. I have until Wednesday to translate everything.

And I will give it to them...the pediatricians who took the questionnaire and realized they just did not have enough information and that they needed more...the pediatricians parents criticize for not having listened- I'll have 500 of them in my hands...for three hours.

God, I mean, I'm only a Mom.
*Smile*
(Grazie...)




---------------------------------------------------------------------

Time for reflections.. 
A nice opportunity to look back for all of us, and let Jodi tell the (Italian) doctors what do when they meet parents like us, and our children..
Our time with pediatricians is done. We hardly see them. Lotte's CI is checked, updated etc, but the last time we 've seen a pediatrician is a long time ago.
What about the ones we did meet......

We suspected that Lotte wasn't hearing as she should after 6 months. At the consultation office, a doctor peeked in her ears, and concluded " fluids in the middle ear.." Case closed...
We accepted the "verdict" and moved on.. As a doctor, he should have followed up. Have us come back asap to check again, until there would be a conclusion about whether she could hear. Not a diagnosis about why she cannot hear at that moment.
FOLLOW UP. If you want to conclude that the child is not deaf, make sure the child can hear.
If it doesn't, and there seems to be a reason... then check later, when the reason for the (temporary) hearing loss is gone.

What I do remember is the first reaction of our family doctor when my wife came with the suspicion that Lotte had trouble hearing.. He checked Lotte and immediately referred us to the ENT in the hospital.
An EXCELLENT reaction. When a mother expresses concerns.. take her seriously...

We managed to get there fast, thanks to another referral by a friend of us (a doctor). This was not appreciated by the ENT-specialist... We should have waited in line.. Yeah, right...
They did a test with Lotte. With a little bell... One nurse would sit across from Lotte, another nurse would ring the bell on different sides... OK, this little girl is deaf. She has learned to read faces.. so.... Lotte passed that test. She could probably read from the face of the nurse across from her where she should look..
Diagnosis: "She can hear." ... .Wonderful.. just what we wanted to hear... even though we KNOW she can't hear...
It's TERRIBLE to do tests that are inconclusive...
A test like that should be done with several speakers around the child... A test with a little bell will never be definitive.... And concerned parents need definitive conclusions...

It took another 5 months to do an ABR, where they found out that Lotte was "profoundly deaf"... From "She can hear" to "Profoundly deaf".. !!
The ENT told us this in the hallway..!! Not in a private office.. In the hallway.
No "sorry.. I thought she could hear" or "I never expected this" or "I was wrong"... Just a little information to the mother in the hallway...
It's TERRIBLE not to show respect...
The message that your child is deaf comes as a huge shock. Even we, who triggered fire alarms, played terrible mobile phone sounds next to her ears, and KNEW she was deaf.. even for us, the official sentence was a shock..

Then, the refusal to start applying for a cochlear implant.. First Lotte had to try HA's.
Fair enough, but with the waiting-list in Norway being a year at that time, they could have applied and while waiting Lotte could wear HA's.. But no.. first wasting precious time with HA's, that were of no use to her...
Perhaps it's the official way, but when HA's had worked, one could have just cancelled the CI-application at any time. No time would have been wasted.
If the parents want it, APPLY FOR CI as soon as possible.

A year of not hearing is a lot for a small child, and it will be a problem later on. In some area's Lotte started with a 2 years gap... and even though she's catching up... it shows in her daily life.
Nowaday's, with screening at birth, this is not necessary any more, but it shows how much valuable time can be saved with screening straight after the child is born.
NEWBORN SCREENING is essential.
it will make the journey for these deaf children so much easier, and the results so much better.
(Many articles confirm this... and with more and more screening and research, this will be more and more obvious.)

From the time we had an OK for cochlear implants, our experiences with pediatricians have been great. They have showed us respect, and explained all possibilities.
They were realistic, even conservative about possible outcome. For example, they never said "Your child will be able to have a telephone conversation.." They never promised anything they could not back up.
And that's great.
Parents need REALISTIC prognoses. Not castles in the air..
In the end, Lotte went beyond the expectations that the ENT's talked about.. And that's great.

Sometimes it is said - by people who have no idea - that choosing CI for your child is the easy way out.
In a way... I wouldn't know, because we never raised a deaf child, except for the first 2¼ years, of which we knew she was deaf for 1 year... And, it was tough.. sure..
But, it's not easy when the child has CI. It's not a pick-nick. It's hard work. Especially working with your child and making it fun, not work..
Parents need to be informed that they will have to WORK to get results...
It's not a miracle where the child goes home hearing. It requires WORK from both parties. The parents and the child. Getting CIs is only a start, it's a beginning of a long period of hard work to MAKE it work. And the parents need to work in such a way as so that the child doesn't see it is work at all... and again.. that's hard work!

1 comment:

Jodi Michelle Cutler said...

Could you translate all that into Italian please? God, I did not know that you went through all that...thank you so much for sharing and spreading the word...you guys are the best *smile*

(Some) Milestones

  • 2013-08: Grade 6
  • 2012-08: Grade 5
  • 2011-08: Grade 4
  • 2011-03: BTE's on the ear
  • 2010-08: Grade 3
  • 2009-08: Grade 2
  • 2008-08: Mainstream School (6y. old)
  • 2006-10: All-hearing Kindergarten (4y. old)
  • 2004-11-22: CI activated (27 m. old)
  • 2004-10-04: Bi-lateral CI (26 m. old)
  • 2003-08: Deaf/HOH/CI Pre-school/"DEAF" Kindergarten (12m. old)
  • 2003-07: HA's fitted (11 m. old)
  • 2003-06: Diagnosed deaf. Start sign-language (10m. old)
  • 2002-11: Suspicion loss of hearing (4 m. old)
  • 2002-08: Born - A fierce LION
--- Google Analytics