[tri-med] Re: Can you help?

----- Original Message -----
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
> No it doesn't hurt - I am not sure what about the picture that upsets you,
> but I am presuming that its the cleft.


Maybe we're looking at different pictures?
I don't think the photo we've been discussing is of a cleft----I've seen
those in non-tri children and that doesn't really strike me. I've seen some
severe clefts in pics that list members have shared and DIDN'T ever have the
feelings I do with the picture Kristin pointed out. The top pic on that page
is what I'd consider a cleft.

You are SURE it doesn't hurt? Even with you telling me it doesn't I can't
get it out of my head that that hole must be painful. Ok, ok........I'm
going to take your word on it Karen.

What bothers me about this picture is: the nose is sideways up on the
forehead, there is one eye in the middle of the face that looks raw and
painful and is an open wound. This picture looks as if someone was
experimenting on the little one (hense my Frankenstein comment
earlier--meant to convey a feeling of someon experimenting on this infant).

 > The boy in the second photo I do know (as do you) - its the child of an
ex
> list member.

I did wonder if we "knew" any of the pictured children.



> 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.

Call me clueless..................well, maybe I do have a thought but you
know--those aren't the things that I remember about the children that
parents post. It's more the thoughts and feelings and love that stay with me
as a rule.

Perhaps since I'd not seen a wide variety of pics showing numrous anaomlies
I don't get a clear vision in my head of what someone is describing verbally
(no frame of reference).

>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.

Using this info then you are saying that what we are seeing in the picture
is actually a cleft. Apparently my definition was too limiting (the mouth).

>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.

Would it be a correct presumption to say that if there are such massive
external anomolies that there would be as many severe anomolies internally?
As a rule.


> 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.

This I know and have seen.

> 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.

True again.

> 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.

This particular page must have been a very early one on the web when there
was even less info out there than there is now. Wow.

>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.

Don't you think they did that on purpose as Aaron is more the exception than
the rule?

> 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.

See, my puter illiteracy is showing.  :0)



> 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?

On the one hand I do agree with you Karen. It does seem that there should be
a point made to those visiting the site that this is but ONE possibility (or
perhaps by the variety of pictures they feel they are doing that?).

After getting all the gloom and doom from drs and then searching for info
and seeing this page I believe that if I were preg and in that position I'd
sink into a despair quite deep that there was NO way things could be
anywhere close to ok. This is most definately a Catch-22.

Right now I'm counting my blessings that I was ignroant of Alex's trisomy
prenatally!

 > I too am sorry if this way of thinking upsets folk - its certainly
something
> that I have agonised with over the years.

I came VERY close to not even responding to the intial post re: this picture
because I just KNEW that there would be feelings on each end of the spectrum
and there was a huge potential for some to be offended, upset and hurt.

Then I thought, if we can't discuss the hard issues and be honest in our
feelings and our thoughts than this list isn't living up to its potential.



> 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.

Personally I guess I'd want to know so there wouldn't be the initial shock.
I believe I'd be able to look past that in my child and move onto the
bonding and love quicker. ONLY if the pics were representative of what
testing indicated my child had. I don't think I'd want to be shown scenarios
that weren't indicated in my child.

> 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.

LOVE.

And I always feel honored when people share their family with me.


>  It also brings me back to reality - not everyone is like my child.

That's one thing that the pics don't tell you on a website--each child is an
INDIVIDUAL despite the trisomy diagnosis. Nothing is written in stone.
This list is invaluable in showing that.

Michelle mom to Alex (16,partial trisomy 14 mosaic) and Molly (12)
MichiganUSA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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