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

Thanks for sharing that Faye,
i have a friend whose child was diagnosed prenatally with "something". They 
knew that there was a single gene abnormality, but did not know which one. The 
U/S showed brain abnormalities. When mom asked what the child's limitations 
would be, nobody knew but she had some terrible scenarios provided to her as 
fact. 

The reality is that in the prenatal world, it is becoming increasingly the case 
that the unborn is perfect and the pregnancy carries on, or not perfect, and a 
termination is suggested. After all, just a few more months and you will likely 
be having another model that is perfect. 

I am not sure that it matters to them if the child is delayed, or in a PVS 
state. Perfect or not perfect; those are the two categories. 

Thanks for your candor regarding choice of disability. Of course, everyone 
wants a normal, healthy baby and is upset to discover that that is not the 
case. As your experience illustrates, "perfect" comes in many packages and many 
parents realize that the gift they rec'd is not the one requested, but the best 
one, all the same. 

I hope that we can gather stories etc to have available as the ironman does 
more races. He gets more and more media attention. Of course the reporters will 
ask "what is trisomy" and unless we provide otherwise, they will obtain a grim 
description from a medical text. 

Barb







> Subject: [tri-med] Re: FayeRe: Do tri 13/18 kids experience joy?
> Date: Wed, 27 Aug 2008 12:28:01 -0500
> From: fkaufman@xxxxxxxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> 
> Barb, the saddest thing is that if asked before hand if I was willing to
> take a child with T-18 I probably would have said, "No thanks, I'll just
> take the normal one.  Today 11 years and 10 months later, my life with
> Morghan is much richer than it would have been with the "normal" child.
> There are worries and experiences with Morghan that I would not have
> with a "normal" child but, and that is a big but, there are worries
> (drugs, teen pregnancy, car accidents etc) and experiences I would have
> with a normal child that I will not have with Morghan.  When my friends'
> kids hit the teen "I know it all and my parents are really dumb" years,
> I will not know if Morghan thinks that as she does not speak.  You get
> my picture.  
> 
> My point about the doctor speaking without first had knowledge is that
> most of the doctors our children will meet have never met a child with
> T-18 or 13 or T anything, so they can not know how one does or does not
> interact, they have no idea that Morghan will crawl over to you and pull
> herself up than walk you to her chair so you can give her some food or
> just get you to pick her up so you can hold her because she has decided
> to share her sweetness with you at that particular moment. 
> 
> We have a friend that is an OB/GYN when he heard about Morghan he was
> surprised that we had heart surgery.  He attended a party for a mutual
> friend when Morghan was about 6 months old because he heard we and she
> would be there.  My friend told us that he had counseled families for
> years to terminate "Morghan type pregnancies" and after seeing Morghan
> and us and that we were happy he was ashamed of himself, ashamed that he
> had counseled not from experience but from a text book.   That says it
> all.
> 
> Sorry to have run on, you tell this is my "soap box".
> 
> Faye
> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
> On Behalf Of Barbara Farlow
> Sent: 08/27/2008 11:13 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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