[tri-med] Re: the truth disappears, quickly

 yes, I went to the  ------link and they only have a page on Down's and
Fragile x and pku I think. No page on Edwards and none on Patau and none on
how to kill them without the parents noticing.
Sorry families, I am very tired and not thinking clearly obviously. Becca
has yet another infection and I was up half a dozen times through the night,
between feeling too miserable to wear her cpap (so more alarms than usual)
and trips to the WC and I tried the septra and it's not working (day 5) so
she has another resistant UTInfection :(.

Catherine, mum of Becca (33yrs, reading, writing, dancing Trisommy 13)



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Barbara Farlow
Sent: Friday, February 15, 2008 9:45 PM
To: tri med lists
Subject: [tri-med] the truth disappears, quickly


Dear Friends,
Well, that certainly didn't take long. I told the geneticist that I was very
pleased to see the truth of the situation on the web-site and although I
believed that it was wrong (and a violation of human rights as it was
genetic discrimination) that it was still better to tell the truth than have
a lie.

If we had known that Annie would only be provided with supportive care, then
we would have managed her health in a different way. I think that we would
have just taken her home and hoped for the best.

Today, the definition has vanished, but I managed to find the cached
version. I am pleased to provide it privately to anyone who is interested.

Irene, you asked about a child with a very rare chromosomal diagnosis who
was being provided with excellent care in Canada.

I have a few guesses as to why that might be.

First, Annie relieved excellent supportive care. Her hypoglycemia was
extremely well managed by everyone. They were really pushing for a g-tube so
that was a surgery that was offered. But when her "natural" life was
threatened by skyrocketing CO2 levels, they did not investigate the cause.
The told us her trachea was fine and it was not until after she died that we
learned of the critical CO2 and Bicarbs.

Another possibility is that the rare chromosomal disorders may not have
statistics. Trisomy 13 and 18 = lethal. It is that simple. For doctors who
are supposed to be so smart, for some reason they can't look beyond that.

It is a mystery to me why this description was added and an equal mystery
why it was suddenly removed when I found it and congratulated them for
telling the truth.

Barb

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