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

That's a good idea! I have done some speaking to OT/ST and special ed students 
at two universities.  I've also hosted the OT/ST students in my home to meet 
Jackson for class projects about conducting home visits.  I live very close to 
the Medical College of WI, I should see if they need any parents to speak to 
classes.  
 
Wendi
--- On Wed, 8/27/08, Barbara Farlow <b_farlow@xxxxxxxxxxx> wrote:

From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
Subject: [tri-med] Re: Do tri 13/18 kids experience joy?
To: tri-med@xxxxxxxxxxxxx
Date: Wednesday, August 27, 2008, 11:59 AM

Thanks for sharing that story Wendi.
You really should consider going back to those doctors. It sounds like your ob
is compassionate. I wonder if he/she might open the door or show you the door of
somewhere that you can share your experience with perinatologists and genetics
people? Maybe there is a college nearby? I have had the opportunity to speak to
med students via the genetics classes. It is the best opportunity of all. 

barb



> Date: Wed, 27 Aug 2008 09:46:06 -0700
> From: wendijo24@xxxxxxxxx
> Subject: [tri-med] Re: Do tri 13/18 kids experience joy?
> To: tri-med@xxxxxxxxxxxxx
> 
> These stories always make me so sad.  I haven't shared this story
before, but when I was 22 weeks pregnant with Jameson, the Level II  u/s showed
a choroid plexus cyst.  The perinatologist came in and said that based on my age
(38) and having another child with a trisomy, he felt that this baby had trisomy
18 and we should consider terminiation.  This is with no other testing done.  I
was horrified that he would go right there without any other confirming tests.  
>  
> I insisted on bloodwork before we made any decisions about anything and
went to have a Quad Screen done.  I was a mess.  The woman behind the counter at
the Lab looked at my orders and said, "Does this mean what I think it
means?"  I asked her what she thought it meant.  She said, "That
you're having Quads!"  I started crying so hard I couldn't speak.
>  
> Long story short, bloodwork came back fine, the cyst was gone at the next
u/s and Jameson is now a healthy 7 month old.  And, no apology from the
perinatologist.  My OB felt horrible and said he wished he would've known
what happened because often times the cysts resolve themselves with no other
issues.
>  
> I'm just always so shocked that so many doctors don't give these
babies a second thought and think that they are disposable.
>  
> We were told Jackson would never walk, talk, learn and have a myriad of
health issues.  He was 5 weeks old at the time, we didn't know about his dx
before birth. He's definately behind his peers, but he's labelling
colors, numbers and letters, has a huge vocabulary, and loves playing with other
kids.  He has an awesome sense of humor and is a loving, affection little man. 
I so want to go back to those drs and tell them they have no clue.
>  
>  
> Wendi, mom to Jackson, trisomy 4p, inverted duplication, 4 years and
Jameson, 7 months
>  
>  
> 
> --- On Wed, 8/27/08, Barbara Farlow <b_farlow@xxxxxxxxxxx> wrote:
> 
> From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
> Subject: [tri-med] Re: FayeRe: Do tri 13/18 kids experience joy?
> To: tri-med@xxxxxxxxxxxxx
> Date: Wednesday, August 27, 2008, 11:13 AM
> 
> 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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                  Building ___ooOOoo__ Rainbows
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                  Families Helping Families On-line

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