[tri-wings] Re: hospital education re trisomy ??? -sorry long

 
Thanks so much for your Nadine, 

It sounds like you have done a tremendous amount of positive good for your
hospital. I'll bet you have taught them so much with the grace of your
attitude. 

I think all of the children's lives are beautiful no matter how long. I have
never witnessed such love as that of a parent who know their child will not
be with them for long. It is so beautiful. 

It makes me sad to hear you say that you feel you could have done more. Like
you said you madke the right decisions for what you knew at the time. I
guessI have to tell myself the same thing. WE did our best for Annie, and
can't bear any blame for the actions of the drs. I guess it is natural
though. 

I will send you a copy of the slide show my daughter made for the drs at the
hospital. Make sure your speakers are on; although there is no sound forthe
first few slides. The words on the last few sldes have been changedd since
the meeting to reflect actions that the drs couldn't/wouldn't explain or
account for. 

IF ANYONE ELSE OUT THERE WOULD LIKE ME TO SEND IT I WOULD BE HAPPY TO.
Pleasedon't hesitate to forward it to anyone with an interest. 

Thanks again for your response 

Barb


----------------------------------------------------------------------------
From:  Nadine Walther <bienschen23@xxxxxxxx>
Reply-To:  tri-wings@xxxxxxxxxxxxx
To:  tri-wings@xxxxxxxxxxxxx
Subject:  [tri-wings] Re: hospital education re trisomy ??? -sorry long
Date:  Sat, 25 Mar 2006 23:24:36 +0100 (CET)
Hi Babara

I think it might be a good idea to collect mabey birth
stories, viedeos, pictures... from families with
Trisomy children, to show your hospital how precious
our children are and how much they are loved and how
much every second of their live counts for us as
beautiful memories. That the families and the children
are thankfull for every second they get to spend with
each other!!! Or how beautiful the live for the still
living children is! Mabey even go on TV with it for to
wake the society up. ( I tried to get discovery
channel to bring a report about T18, they still didn`t
answer). What I have recognized that the most people
don`t see our children like children, for them it is
just another case of a very ill baby what shouldn`t
have been born in the first place. And they think we
can be thankfull that our children didn`t live so long
b/c "it is lesser hard on us" ! I think this people
don`t know what they are talking about. We had the
same problem with our hospital, they told us they
wouldn`t do anything to keep our daughter alive and
she just would suffer more if we put her on a
reaperator (that was the only choice they gave us, to
put her one one of those, and then not without
fighting for it). We ended up making a birthplan what
got shown to all the staff beforehand, which included
our daughters name. From this point it got a little
better at least she wasn`t anymore any case she had a
name for the medical staff. We also chose for her just
to get comfort care (and they still didn`t do
everything what we requested). We felt pretty left
alone and we know they wouldn`t operate her heart
deffect b/c she was so small and they thought it
wouldn`t make a difference anyways! At this time it
was the best desicion we could make with the
information (like she would have a lot more
birthdefects as she actually had at the end) we had.
If I could go back in time I would make a lot things
different. I think the society and the "world class"
hospitals needs to be more  informed about it, so
parents in our situation get better help and more
opportiunities for making their final choises. I feel
every day bad because I feel like I didn`t do enough
for my daughter. I think it is so great what you
trying to do! Hopefully your hospital and a lot other
get soon a wake up call!!!

We gave our hospital information for parents about T18
and support groups for to find help and we gave the
hospital als a birthanouncment and the nurses
chocolate and a thank you card (the nurses was the
only real help there, they tried to keep my minde and
hope up a little bit), so we could show them how much
our daughter meant to us. Some of the doctores reacted
really uncomfortable because we showed them that our
daughter was in our eyes as much important as any
other baby to any other parent. If I see them today
for further testing they react to me with a lot more
repect and tell me always how much they addore me for
how I keep my head up through all this time, they
wouldn`t be able to do this. I belive we made a little
difference there, at least I hope so. It just sad that
we had to do all of this and had to go through all of
this for to get someones attention!!!


Nadine
mommy to

m/c 12/22/2003 (reason unknown)

m/c 09/06/2004 (reason unknown)

Leyna Marie T18 09/23-09/23/2005

m/c 02/19/2006 (still testing)




--- Barbara Farlow <b_farlow@xxxxxxxxxxx> schrieb:

    Is anyone
>aware of anything going on
>intheir hospitals, or have a comment on ifsuch an
>idea may be effective?   I
>am asking all of you if you have any ideas that may
>improve the humanity and
>compassion that appears to be missing in this world
>class hospital.   Thanks
>so much for your input. Sincerely, Barb   Mom to
>ANNIE 05/25/05-08/12/05
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>







___________________________________________________________
Telefonate ohne weitere Kosten vom PC zum PC: http://messenger.yahoo.de
                   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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