[tri-med] Re: medical treatment in their early days/Barb

When Tess was about six weeks old (from memory) she was failing. Her 
mother was a GP, and had therefore extensive medical knowledge to 
back up her instincts. She was taken to the emergency ward at the 
local children's hospital. Even though it was asked for by Julie (her 
Mum) she was not taken to PICU, but a ward. She was bagged for hours. 
(from memory) I was present during one of these episodes, and it was 
horrible to watch. A group of residents including a female resident, 
asked Julie and Ian "what do you want us to do for Teresa" (Tess). 
Julie responded "I want you to treat her like any other little baby." 
They did agree in the end to do a sleep study and put her on CPAP. 
She was NEVER taken to PICU. She came home with a monitor which 
downloaded info to the children's hospital via the telephone. This 
had alarms, which were supposed to go off if her stats dropped as 
well. This was organized through the sleep study unit. As far as I 
can remember they usually went off from "carer error". I believe that 
Julie being a doctor was the reason they offered the sleep study. But 
they still resisted taking her to ICU.

The reason I'm a little fuzzy on this information is a) I'm a little 
older, and b) Tess is now nearly ten years old. What I'm trying to 
say is, in spite of all this lack of medical support Tess had the 
basic strength and I believe the will to live, to battle on. We have 
not been in a situation where Tess's requires immediate surgery to 
save her life, for which I thank God. Tess pediatrician has been 
willing to do whatever Julie wanted. (they sacked the first one as he 
was for non intervention).
A major hospital Westmead Children's Hospital here in western Sydney, 
has a policy of "no surgical intervention on T18 children, as it is 
kinder to the parents".

In those early days, seeing her bagged, and suffering, I admit I was 
unsure if we were doing "the right thing".

TEN YEARS DOWN THE TRACK. I'm the grand parent, but if Tess's had 
trouble in my care now, I would use my learned resus skills, call an 
ambulance, and if when they got to hospital, they refused to do what 
they would normally do for a child in her condition, then they would 
hear me all the way to the USA. Just let them dare say "because she 
is Trisomy 18, that's why".

I kid myself that when they see this gorgeous little girl, there 
would be no question about treating her aggressively. How could they 
not? Just look at her. But then I KNOW I'm biased by an enduring love 
for her. I also acknowledge that it would be a more difficult choice 
if Tess suffered a lot in her life, but for the most part Tess is a 
happy little girl with few medical problems to make her uncomfortable 
and very loved by ALL her family.

Julie used to say "I hope she will die in my arms". So do I as I'd 
HATE to be the one making these important decisions. Why doctors 
think they have the right, beats me.












At 09:55 AM 27/01/2007, you wrote:

>Thanks for your response, Penny.
>
>I didn't mean to indicate that it was the thought of all 
>intensivists; but this was one of the TOP five kid's hospitals and 
>he was unwavering in his convictions.
>(at the same time admitting not to being an expert in genetics 
>but....tri 13 is lethal, he said)
>
>I think that if one dr provides you with assurance, you have to 
>remain very guarded against unfamiliar ones. Annie's records state 
>'not DNR' four times in 24 hours before the DNR was entered without consent.
>
>My biggest question (and source of greatest sorrow) is if they 
>weren't going to provide life saving treatment, why did they have to 
>let her suffer so much? I am not sure they saw her as human. 
>Watching your child being bagged for 1.5 hours (before being 
>accepted in the pICU) is a horror that is difficult to forget.
>
>Barb
>
>mom to sweet Annie 05/25/05-08/12/05
>
>
>
>

Jocelyn, Wife to Frank, Mother to Ian, Gillian & Susan. Maker of 
quilts, singer of songs,
Nanna to Carly 19, Mathew 18, Ashleigh 17, Alex 14, and Tess nearly 
10 years old with T18.
also step Nanna to Carrie age 19. & Great Grandmother to Eli, Jonas & Escha.
Living in NSW, Australia 


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