[tri-med] Re: Can you help?

----- 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

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