[tri-med] Re: Little Baby Boy

Karen this story just sickens me to the stomach.  That poor family and that
poor little boy. It makes me so pleased that we have moved to Victoria - I
have been assured by the Children's Hospital that Matilda will not be
treated like she was in NSW and that she will be offered THE very best care.
Down here we get our pediasure for free and a free feeding tube every month,
along with 2 new syringes - I have been washing and reusing syringes for as
long as I can remember.

I think this being election time that a bit of noise should be made about
this damn hospital near you AND what they did to that dear little baby - I
am very upset.  I can recall the first paed to see Matilda wanting to give
her morphine and Ryde hospital and our GP warned us not to - thank god we
have some caring people in the beginning.

Catherine, wife to Richard and mum to Matilda 5 (full T-18), Tom 4 and Ruby
4.5 months
----- Original Message ----- 
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
To: "Tri-Med" <tri-med@xxxxxxxxxxxxx>
Sent: Friday, September 24, 2004 12:47 PM
Subject: [tri-med] Little Baby Boy


> I received a telephone call this morning regarding a little baby boy who
has T-18 and whose mum only lives a suburb away (we share the same GP). I
gave the aunty all the literature and we discussed getting Zach put back on
feeds (they had withdrawn food and were only giving him maintenance fluids
4mls and hour) and withdrawing the morphine the hospital were giving him
because he was having apneas. But before she could get to the hospital the
little one passed away.
> Could I beg all those who are so inclined to say a prayer and keep this
family in your thoughts. Some tough times ahead.
> And also for me - this has all happened at the same hospital in which I
had Alex. And they stuffed up all the same tests that they did on me (which
is why I am trying to sue them) with this mum, meaning of course that they
havent learnt a THING in 10 years. Plus I get my hackles up when they
withdraw food saying that feeding our kids is only prolonging the
inevitable. I know not everyone agrees but I believe that housing, food and
love are prerequisites and every childs right in a modern country. I also
have issues with giving morphine because the baby had "T-18" not for a valid
medical reason, especially when the little one is having apneas. My
problems, not this mums........... At least they treated the mum a little
better than they did me.
>
> Thankfully I did talk the Aunt into calling into Centrelink BEFORE she
came to my place and lodging the disability forms so that she could claim
funeral benefits and the like. (you have to lodge them while the child is
alive to get them - she made it by an hour). Sometimes I get so mad at the
system and the unfairness of life.........
>
> Love many, hate few, learn to paddle your own canoe.
>   -- American Proverb
>
> Keep Looking For Rainbows!!
>    _--_|\
>  /Karen \
>  \ _.--._ /
>           v Karen, Mum to Alex (10 years, T-18 Mosaic)
> http://members.optushome.com.au/karens
>
>                   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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