[tri-med] Re: The Hospital Tells the Truth

Forwarded for Debbie

> I think the US has an (unwritten) policy very similar to this, based on my
> experience with Claire - esp prenatally.  I could be mistaken, but I see 
> no
> reason to think things would have turned out differently in the US, but in
> hindsight, I'm sure you are willing to have taken that chance.
> Debbie, mom to Claire (T18 and 5 next month)
>
> On Fri, Feb 15, 2008 at 7:30 AM, Barbara Farlow <b_farlow@xxxxxxxxxxx>
> wrote:
>
>> This is in Ontario, Canada.
>>
>> In Canada, we have a socialized health care system. I understand that the
>> US is moving toward that.
>>
>> The up side is that nobody is denied healthcare and in theory, the 
>> service
>> provided is the same for all.
>>
>> The down side is that in order to maintain the system at minimal cost to
>> the taxpayer, there is no accountability anywhere, to anything.
>>
>> For example, when my daughter died, the final nurse committed more 
>> serious
>> standard nursing violations than you could ever believe. The result is 
>> that
>> they likely brought about the death of my daughter (no proof with a 
>> missing
>> medication report) which saved the system money, so that is good. The
>> average person would have terminated a pregnancy with a condition like 
>> Annie
>> so the average person likely doesn't care about what happened to her.
>>
>> If we had known about this policy which has only now been exposed, we may
>> have taken Annie to the US for a diagnosis. This was an option to save 
>> her
>> life that was denied to us because we were never told what the plan of
>> treatment (no surgery) was.
>>
>> I think that this policy is genetic discrimination.
>>
>> barb
>>
>>
>>
>> > Date: Thu, 14 Feb 2008 20:54:20 -0800
>> > From: beaunkev@xxxxxxxxx
>> > Subject: [tri-med] Re: The Hospital Tells the Truth
>> > To: tri-med@xxxxxxxxxxxxx
>> >
>> > It so sad to me that they don't try as hard as they can just because of
>> the diagnosis, they don't know of the kids that live beyond that. I just
>> know it has to do with money also it's sad. Can you tell me what state 
>> you
>> found that in?
>> >
>> > Proud mother of baby Kira (1 year)partial trisomy 7p and 10q, and she
>> loves to talk.
>> >
>> >
>> > ----- Original Message ----
>> > From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
>> > To: tri med lists <tri-med@xxxxxxxxxxxxx>
>> > Sent: Thursday, February 14, 2008 4:23:15 PM
>> > Subject: [tri-med] The Hospital Tells the Truth
>> >
>> > Here is something new that I have just found from our hospital 
>> > web-site.
>> It is sad, but the truth is always better than lies.
>> > Let it be known that this is one World Class Children's Hospital that
>> provides only supportive care for trisomy 13/18 kids. They are either
>> ignorant about the range of presentations of these kids, or they have
>> decided that this quality of life is not worthy of  life-saving 
>> treatments.
>> >
>> > Trisomy 18 and trisomy 13
>> >       Trisomy 18 is when there is an extra copy of chromosome 18. This
>> abnormality causes severe mental retardation. Trisomy 18
>> >         severely affects all organ systems, leading to heart and kidney
>> defects, problems in the central nervous system,
>> > feeding difficulties, and problems with breathing. There may also be a
>> > small lower jaw, low-set ears, webbing between the fingers and toes,
>> > and problems with the skeletal system. Trisomy 18 is a very rare and
>> > serious condition. Babies who are born with it usually pass away before
>> > the age of two years.
>> >       Trisomy 13 is when there is an extra copy of chromosome 13. This
>> can cause severe mental retardation, congenital heart defects,
>> >         cleft lip and palate, and eye defects. It can also cause a
>> condition called holoprosencephaly, where parts of the forebrain
>> >         do not develop. Trisomy 13 is very rare and serious. Babies 
>> > with
>> trisomy 13 usually die by the age of three months.
>> >
>> >       Treatment of trisomy 18 and trisomy 13 is supportive, meaning 
>> > that
>> the aim is to prevent, control, or relieve complications
>> >         and side effects, and to keep the baby comfortable. As the
>> baby¢s condition worsens, he will need palliative care, which is
>> >         designed to make him as comfortable as possible when he reaches
>> the end of life.
>> >
>> >
>> >
>> >
>> > _________________________________________________________________
>> >
>> >
>> >                   Building ___ooOOoo__ Rainbows
>> >                       www.trisomyonline.org
>> >                   Families Helping Families On-line
>> >
>> >
>> >
>> ____________________________________________________________________________________
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>> >                        www.trisomyonline.org
>> >                   Families Helping Families On-line
>> >
>>
>> _________________________________________________________________
>>
>>
>>                  Building ___ooOOoo__ Rainbows
>>                       www.trisomyonline.org
>>                  Families Helping Families On-line
>>
>>
>
>
> -- 
> Sleep is for Pansies.
>
> Faith sees the invisible, believes the incredible and receives the
> impossible!
> If you want the rainbow, you gotta put up with the rain.

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

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