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

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
> 



        

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

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