[tri-med] Re: Can you help?

Re: Reply from Karen,....

Hi Karen,

I can't help but agree with you.  I am the kind of person that needs to k=
now everything, to be prepared(if that is at all possible)!As it happened=
, my little princess was born beautiful and I had to keep reminding mysel=
f that there was something wrong with her.  But rather know, than be so s=
hocked at the birth that it is difficult to bond with your precious child=
.

Anyway, that is just my opinion.

LOL

Kathy s



-----Original Message-----
From: Karen [mailto:karens@xxxxxxxxxxxxxxxx]
Sent: Monday, July 21, 2003 4:09 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Can you help?


----- Original Message -----=20
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 e=
x
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 mom=
ent
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 w=
ho
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 wil=
l
get around.

The problem is that we don't "see" these babies and often don't appreciat=
e
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.=
=20We
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 th=
e
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 opini=
on
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 s=
ee
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 s=
o
ts not something that the web master has control over.

Personally I think it needs to remain. Its valid, those types of deformit=
ies
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 child=
ren
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 chil=
d
may be born with these facial (and other) deformities? Is it better to al=
low
them to prepare themselves? Is it better to give parents the "whole" pict=
ure
so that they can make an informed decision? What message are we sending t=
o
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 someth=
ing
that I have agonised with over the years. And I guess my own experience o=
f
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 th=
e
answer to that - everyone has different views. But I guess I am personall=
y
swayed by the fact I would want to know and because most people I speak t=
o
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 pictur=
es
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 phot=
os
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 the=
y
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 becaus=
e 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=
=20of
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 chil=
d.

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

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=20                      www.trisomyonline.org
=20                 Families Helping Families On-line

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                  Families Helping Families On-line

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