[tri-med] Re: Can you help?

The SOFT page comes up first, followed by other "beneficial" websites 
before this page comes up (in the list of hits on Google and Yahoo), so 
hopefully, they won't only look at the site you are referring to, they will 
see the others... and keep an open mind.  I think the Internet seems pretty 
balanced that way.
People (whether drs or families) are going to believe what they want to... 
part of that is just our defense mechanism to get us through the decisions 
we have to make.  We know that from experience with drs who give only doom 
and gloom prognosis... they are going to be optimistic or pessimistic and 
there is enough information out there to support both sides.
Debbie

At 01:07 PM 7/22/03 +0000, you wrote:
>Okay, after reading everyone's reponses to my post, I am apparently in the
>minority.  But I still hold my position.
>
>
>"The reality is that such birth defects do occur and perhaps more commonly
> > than we are exposed to on the list."
>
>After being in the trisomy world for at least three years now (or at least on
>the edge) I very much know that our children are born with a wide range of
>deformities and defects.  I realize that there are very severe defects that
>some children experience and that these children should be loved just as much
>as those that have less severe defects.  That is not my point.  My point is
>that as a brand new mother pregnant with your first child and getting the 
>news
>that your child may or may not live and may have may issues, it's not a
>picture that you can handle.  I don't have any problem with the other photos
>on the page, but that picture makes a new mother think that is what her child
>will absolutely look like and it puts you in fear for the remainder of your
>pregnancy.
>
>That particular web page has been up for over 10 years - it was one of the
> > initial reasons that the list started the family pages - to give people
> > pictures of the "other side" of the story.>
>
>I am very glad that we are exposed to the "other side" of the story, or else
>there probably wouldn't be too many of our children here.  Honestly, if that
>was the only site available on the internet, I don't know if I would've gone
>through with the rest of my pregnancy.  I am being honest.
>
>  thats almost impossible
> > other than securing the page which would in effect make it 
> inaccessible. Web
> > crawlers don't ask permission about which web pages they list and where so
> > ts not something that the web master has control over.
>
>This is too bad because that is what I really wish would happen.  I guess I
>thought that you could take that particular page off of a search engine and
>leave the others but I am fairly computer illiterate too - lol.
>
>"Are we really doing expectant parents a favour by denying that their child
> > may be born with these facial (and other) deformities? Is it better to 
> allow
> > them to prepare themselves? Is it better to give parents the "whole" 
> picture
> > so that they can make an informed decision? "
>
>I am one of the BIGGEST advocates of learning all that you can about trisomy
>or whatever issue your child may have at birth.  I did that and it was
>invaluable to me because I was able to have the right people there at my
>daughter's birth and was able to ask the right questions.  But that picture,
>to a new mother, is not educating her, it is scaring her.  The other 
>photos, I
>believe, show enough of the reality of trisomy 13 without having to put that
>one in there.  I don't think that photo is necessary to make an informed
>decision.  I think that the other photos, combined with the Rainbows site, 
>can
>allow a parent to make their decisions just as well or better than that
>picture can.
>
>I thank everyone for their honest opinions and also didn't mean to inflame
>anyone by this topic.  I realize that this picture will stay, but I hope it
>isn't the first website that new parents facing a trisomy 13 diagnosis 
>see, as
>it was for me.
>
>--
>Kristin - mom to Hannah - 2 1/2
>years old and t13 mosaic and
>Brennan - age 1
> > ----- Original Message -----
> > From: "Michelle Waite"
> > > I have to confess, thoughts of that last picture crept into my mind a
> > number
> > > of times since I've seen it. I cringe because it looks as if that baby is
> > in
> > > pain--it just HAS to hurt.
> >
> > No it doesn't hurt - I am not sure what about the picture that upsets you,
> > but I am presuming that its the cleft. Actually as far as clefts go, that
> > babies cleft is not too bad asthetically. I don't know the outcome sorry.
> >
> > The boy in the second photo I do know (as do you) - its the child of an ex
> > list member.
> >
> > And yes some of the photos are autopsy photographs.
> >
> > The reality is that such birth defects do occur and perhaps more commonly
> > than we are exposed to on the list. I wont mention names but if you think
> > back to posts I think you will remember who I am referring to. At the 
> moment
> > I am working with a family whose baby has a total facial cleft - so in
> > effect there is no nose or mouth to speak of and both eyes are badly
> > effected. I guess, personally, I would "see" children like this once in
> > every 6 or 7 babies born with T-13. Often however they are the children who
> > are stillborn or who die very shortly after birth because when there is
> > midline defects to that extent usually there is holoprosencephaly,
> > anencephaly and other very severe brain conditions. Again a frequent
> > complication of T-13, and one where no amount of aggressive treatment will
> > get around.
> >
> > The problem is that we don't "see" these babies and often don't appreciate
> > how they look from email descriptions. A number of children with T-13 
> on the
> > list have had eye prosthetics, but usually we only see pictures after the
> > prosthetics have been placed. Many have clefts, but we see that written
> > often and we don't usually give it a second thought when we don't see 
> it. We
> > even have a list member whose child (a very long term T-13 survivior) who
> > had anopthalmia (no eyes at all).
> >
> > That particular web page has been up for over 10 years - it was one of the
> > initial reasons that the list started the family pages - to give people
> > pictures of the "other side" of the story. To try and balance things a
> > little. The photo of Aaron (the boy with the walker) in my personal opinion
> > is not large enough, or obvious enough. Many people have in the past
> > attempted to pursuade the Uni to take the pictures down, and as you can see
> > the attempts have been unsuccessful.
> >
> > As for making it less obvious in web listings - thats almost impossible
> > other than securing the page which would in effect make it 
> inaccessible. Web
> > crawlers don't ask permission about which web pages they list and where so
> > ts not something that the web master has control over.
> >
> > Personally I think it needs to remain. Its valid, those types of 
> deformities
> > do occur and if you go to the cleft pals website you will see pictures of
> > children who "look" a lot worse. Similarly I believe that photos of 
> children
> > who are stillborn, photos of babies in coffins etc also need to be posted.
> > Are we really doing expectant parents a favour by denying that their child
> > may be born with these facial (and other) deformities? Is it better to 
> allow
> > them to prepare themselves? Is it better to give parents the "whole" 
> picture
> > so that they can make an informed decision? What message are we sending to
> > parents if we hide the facts and these children. Is it "sorry your child is
> > too awful to look at and should be hidden from the world".
> >
> > I too am sorry if this way of thinking upsets folk - its certainly 
> something
> > that I have agonised with over the years. And I guess my own experience of
> > not being forewarned of Alex's diagnosis, of not being prepared for his
> > physical deformities is reflected. I also speak regularly to parents who
> > weren't warned of facial clefts or even omphaloceles and spina bifida and
> > what they would look like. Better to know or not to know? I don't know the
> > answer to that - everyone has different views. But I guess I am personally
> > swayed by the fact I would want to know and because most people I speak to
> > prefer to have that warning - even if its just so that they are able to
> > "prepare" other family members.
> >
> > In some ways I often feel guilty posting photos of Alex because I usually
> > select them carefully - you normally don't get to see his ears, or pictures
> > where his facial paralysis is obvious. There are no photos posted of his
> > hands or feet either. I applaude people like Debbie who bravely post photos
> > of their kids where the facial paralysis is obvious. The families who are
> > brave enough and loving enough to post photos of their children after they
> > have become heavenly angels.
> >
> > I think most of the folk on the list know that I have many many pictures of
> > our kids on my dining room wall. Some visitors I guess are shocked 
> because I
> > proudly display photos of our kids that are similar to those on the Uni
> > website. Yes I have photos of babies born at 23 weeks gestation 
> alongside of
> > kids like Jo. To me its the reality, and portrays the full extent of
> > trisomy. It also brings me back to reality - not everyone is like my child.
> >
> > The roots of true achievement lie in the will to become the best that you
> > can become.
> > -- Harold Taylor
> >
> > Keep Looking For Rainbows!!
> > Karen, Mum to Alex (8 years, T-18 Mosaic)
> > http://members.optushome.com.au/karens
> >
> >                   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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