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

Do you know, is their policy on care for children with trisomy and
chromosome disorders is only for the more common known disorders?
The reason I ask is that there is a 2 yo little boy in Canada with a rare
chromosome disorder who has a very hard time his entire life.  He has been
hospitalized probably much more than he has been home.   I am really amazed
at all the care the hospital provides for him, considering what happened in
your situation.  I will assume his level of care is due to the fact that his
disorder is so rare?

I don't know if you have any insight, just curious.

Take care,
Irene

On Thu, Feb 14, 2008 at 7:23 PM, Barbara Farlow <b_farlow@xxxxxxxxxxx>
wrote:

> 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
>
>


-- 
Irene
Christina (6), Caroline (4 with partial trisomy 17p) and Kallie (2)
http://www.caringbridge.org/visit/carolinesmith
http://ourpieceoftheworld.blogspot.com


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

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