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

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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