[tri-med] Re: Surgery at Toronto Sickkids for Tri-kids???

Thanks Satinder, 

I know Anne well and have asked this question before. 

SOFT has only registered one child EVER as having cardiac surgery at Sickkids 
hospital. 

That one child was Katya Sansalone, whose father was in the video below. 
Ultimately, he ensured TOF cardiac surgery for his daughter after enlisting the 
support of many toronto ethicists. It was a battle, to be sure. 

I suppose that not all families will connect with SOFT, but the stats sure 
sound surprising. 

Thanks for the offer of this idea!

Barb

> From: satinder@xxxxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: Surgery at Toronto Sickkids for Tri-kids???
> Date: Fri, 17 Apr 2009 11:49:48 -0400
> 
> Ann Barnes, a nurse and mother of a T18 child, and SOFT board member
> might be able to help you if any of those parents completed SOFT
> questionnaires.
> 
> Her email is:  fbarnes@xxxxxxxxx
> 
> 
> ----- Original message -----
> From: "Barbara Farlow" <b_farlow@xxxxxxxxxxx>
> To: "tri med lists" <tri-med@xxxxxxxxxxxxx>
> Date: Fri, 17 Apr 2009 14:51:47 +0000
> Subject: [tri-med] Re: Surgery at Toronto Sickkids for Tri-kids???
> 
> HI Kim, 
> 
> By all means. I am determined to seek out just one of the children 11
> children who had cardiac surgery at the Hospital for Sick Children
> between 2002-2007. 
> 
> If this was indeed the case then 11/48 children with tri13/18 are
> receiving cardiac surgery. This is roughly 20%. It would seem that it
> would be the best hospital in the world for our kids. It is odd,
> however, that the obstetrician at the high risk pregnancy unit at the
> hospital across the street had told us that there was a policy against
> surgery and something to the effect of,"nobody would crack the chest
> open on one of these kiddies"
> 
> I appreciate anyone's help in helping me to find just one of these
> children. 
> 
> Barb
> 
> 
> 
> > From: kimihlenfeldt@xxxxxxxxxxx
> > To: tri-med@xxxxxxxxxxxxx
> > Subject: [tri-med] Re: Surgery at Toronto Sickkids for Tri-kids???
> > Date: Fri, 17 Apr 2009 08:18:01 -0500
> > 
> > Hi Barb.  I was wondering if you would mind if I forwarded this e-mail to 
> > some friends and family members?  
> > 
> >  
> > 
> > Kim
> >  
> > > From: b_farlow@xxxxxxxxxxx
> > > To: tri-med@xxxxxxxxxxxxx; tri-wings@xxxxxxxxxxxxx
> > > Subject: [tri-med] Surgery at Toronto Sickkids for Tri-kids???
> > > Date: Fri, 17 Apr 2009 01:46:00 +0000
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > 
> > > Hello friends, 
> > > 
> > > We had our big day on Tuesday for the human rights hearing. The Hospital 
> > > is trying to have our complaint dropped on the basis that we made it past 
> > > the deadline. 
> > > 
> > > There was good reason for that as we spent two years trying to affect 
> > > change at the Hospital. Then the human rights officer in Geneva 
> > > Switzerland heard Annie's story and insisted that I make a complaint and 
> > > appeal to the international level, if need be. 
> > > 
> > > As many of you know, there were a multiple number of violations in 
> > > narcotic procurement, administration and documentations in Annie's final 
> > > 3.5 hours. Really, it is unbelievable. It was like a narcotic hay-day. It 
> > > makes me wonder, is it like this for all children at this world class 
> > > hospital or only the ones with genetic conditions associated with 
> > > disabilities who die when DNRs that are entered without informed consent? 
> > > 
> > > The most serious concern was that 100mcg of Fentanyl ( a lethal dose for 
> > > a 5.3 kg baby (11lb) ) was removed without a doctors order. The intensive 
> > > care doctor is willing to testify that it was not administered but was 
> > > totally wasted. However, there is no record of it being wasted either. 
> > > 
> > > The reason I am writing is that one of the things that the hospital has 
> > > written in their human rights response is this: 
> > > 
> > > "The Hospital conducted a review of Trisomy 13 and Trisomy 18 patients at 
> > > the Hospital between April 1, 2002 and February 28, 2007. During this 
> > > time period, there were 48 patients with Tri 13 or Tri 18. Of these 
> > > patients, 11 had cardiac interventions (ie surgeries)."
> > > 
> > > I am having a difficult time with this statistic. In 2001, a father had 
> > > this tragical experience at the same hospital with his baby with trisomy 
> > > 13. He finally got surgery, but it took a whole team of ethicists to 
> > > support him. (his daughter is alive and well at age 7 now)
> > > 
> > > The video may be insightful to those who believe that public health care 
> > > is a good thing. 
> > > 
> > > http://www.youtube.com/watch?v=UNzJt8fbavo&feature=related
> > > 
> > > Could you please inform me if anyone remembers anything about a family 
> > > with a tri-baby having cardiac surgery between 2002-2007 at the Toronto 
> > > Hospital for Sick Children? 
> > > 
> > > I know that SOFT has only one record of cardiac surgery and that is from 
> > > the family in the video above. 
> > > 
> > > I have attached a copy of the media we had about our hearing if anyone is 
> > > interested. 
> > > 
> > > Thank you so much. 
> > > Barb (Annie's mom)
> > > www.anniefarlow.com
> > > 
> > > 1. Toronto Star Article, http://www.thestar.com/News/GTA/article/618581
> > > 
> > > 
> > > 
> > > 2. CTV News clip: http://toronto.ctv.ca/ 
> > > (put "farlow" in search at the top)
> > > 
> > > 
> > > 
> > > 3. Global News clip: 
> > > http://www.globaltv.com/globaltv/ontario/video/index.html?
> > > (under infant human rights)
> > > 
> > > 
> > > 
> > > _________________________________________________________________
> > > Share photos with friends on Windows Live Messenger
> > > http://go.microsoft.com/?linkid?50734
> > > Building ___ooOOoo__ Rainbows
> > > www.trisomyonline.org
> > > Families Helping Families On-line
> > > 
> > 
> > _________________________________________________________________
> > Windows Live?: Life without walls.
> > http://windowslive.com/explore?ocid=TXT_TAGLM_WL_allup_1b_explore_042009
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> > 
> 
> _________________________________________________________________
> Reinvent how you stay in touch with the new Windows Live Messenger.
> http://go.microsoft.com/?linkid?50731
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 

_________________________________________________________________
Reinvent how you stay in touch with the new Windows Live Messenger.
http://go.microsoft.com/?linkid?50731
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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