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

Wendi,
That is excellent!! In Wisconsin, you have the famous Dr. Norman Fost, a 
pediatrician and bioethicist. He was instrumental in changing the way the Downs 
babies were treated. He was recently awarded the highest award for ethics by 
the American Peds Academy. 

Are you near Madison? 

Barb



> Date: Wed, 27 Aug 2008 10:11:12 -0700
> From: wendijo24@xxxxxxxxx
> Subject: [tri-med] Re: Do tri 13/18 kids experience joy?
> To: tri-med@xxxxxxxxxxxxx
> 
> 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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>                        www.trisomyonline.org
>                   Families Helping Families On-line
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> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
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_________________________________________________________________


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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