[tri-med] Re: FayeRe: Do tri 13/18 kids experience joy?

When Elanor was diagnosed, our ped gave us some copies of pages from a
medical book he had.  I don't know how old the pictures were, but I believe
they were the same or similar to the ones you are describing.  After I did
some research on my own (there isn't much out there, and some of it is
awful) I saw that the medical book wasn't exactly accurate.  Don't get me
wrong, it isn't a walk in the park to have a baby born w/ a trisomy (as you
all know), but it isn't the end of the world like they tend to make it out.
Fortunately, our ped was a Christian man who was very optimistic and
supportive of our decisions.  It's too bad that some of the medical
community is biased, and some more is just plain uninformed in this area.  I
am fortunate in that I am able to research online, and will do so until I
find all possible angles.  I think it was the SOFT UK site that I found a
picture of a little T18 girl that was absolutely adorable.  It was one thing
that kept my hope alive for Elanor.  We volunteered to host a conference
here in Boise in the future, and I have an idea to focus a big part on
education & communication with doctors, therapists, and any other part of
the medical community that interacts with our kids--ways we can take the
conference home to us and to our physicians.


Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne 



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Barbara Farlow
Sent: Wednesday, August 27, 2008 10:13 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: FayeRe: Do tri 13/18 kids experience joy?

HI Faye,
I agree, but that is the problem. This is a seasoned and experienced
neonatologist who has been directing parents on choices to make for decades.


One of the administrators at the hospital that we had our troubles at told
us that in one internal meeting pertaining to our situation, one of our
daughter's physicians, asked, "But who would want a child like that
anyways?"  Now I understand why. 

Our very aggressive government-run genetic screening/testing/termination
network uses teaching materials for physicians that show a severely
afflicted (likely stillborn) infant with trisomy 13 alongside a picture of a
cyclops as if to make the comparison of two monsters side by side. (I am
happy to forward the picture to anyone upon request)

Those who stand to profit by a reduction in medical costs that are realized
by the elimination of some kinds of kids, encourage the belief that genetic
kids are like non-sentient monsters with no worth whatsoever. 

So, how do we make the truth be known?

Barb



> Subject: [tri-med] Re: Do tri 13/18 kids experience joy?
> Date: Wed, 27 Aug 2008 10:13:11 -0500
> From: fkaufman@xxxxxxxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> 
> The doctor obviously spoke with out first hand knowledge!
> 
> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
> On Behalf Of Barbara Farlow
> Sent: 08/26/2008 8:10 PM
> To: tri med lists; triwings
> Subject: [tri-med] Do tri 13/18 kids experience joy?
> 
> Hello friends in trisomy,
> In communication recently with an experienced neonatologist, I was quite
> surprised to read that he believed that children with tri 13/18 were not
> worth saving because they were "not sentient", which means that they are
> not capable of experiencing joy or interacting with their surroundings. 
> 
> Wow. This is certainly not what I saw when I did research before my
> daughter was born. Sure, it is a tough road, with a lot of sacrifice.
> But as for not experiencing joy....
> 
> I sent him some videos; a child with tri 13 and mieko videos (I made
> special mention of the one aptly named, "giggles")
> I seriously wonder if loving parents see something as clear as day that
> physicians and the medical system are blind to. 
> 
> Does anyone have any comments about this? 
> 
> By the way, the ironman just finished his 11th race to increase
> awareness. He is getting more and more press each time. It is pretty
> exciting. 
> 
> www.ironmanforkids.com
> 
> Barb  (mom to Annie)
> 
> _________________________________________________________________
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 

_________________________________________________________________


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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