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

thanks for sharing that, Jocelyn.
Each of these kids are different and each family is different. If the hospital 
says they will not provide life saving treatment for any of them it is bad, but 
to say they will and then insidiously deny appropriate treatment or palliation 
for a problem they have denied is unforgiveable. 
 
There is a physician(pediatrician) in California who has a teen-aged son with 
trisomy 13 and interestingly, there is a crop of survivors all around the 
vicinity of this physician's practice. I think that this is very interesting 
and says a lot. 
 
Thanks for sharing your memories and I am glad they improved with time!
 
Barb


> Date: Sat, 27 Jan 2007 12:07:42 +1100> To: tri-med@xxxxxxxxxxxxx> From: 
> jknowd@xxxxxxxxxx> Subject: [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 > > > -- > No virus found in this outgoing 
> message.> Checked by AVG Free Edition.> Version: 7.5.432 / Virus Database: 
> 268.17.8/649 - Release Date: 23/01/2007> > > Building ___ooOOoo__ Rainbows> 
> www.trisomyonline.org> Families Helping Families On-line> 
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