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

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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