[tri-wings] Re: hospital education re trisomy ??? -sorry long

 
Hi Jill, 

Thanks for your response. It is so difficult to know what to do or not do
medically.We knew that the chances for Annie were slim, but we weren' t
prepared to give up before she was even born. Our goal was to keep an open
door to considering medical treatment that could be done for her. Basically,
to make decisions based on her and not on her diagnosis. We also didn't want
to have "quality of life" impact any decisons because we had explored that
and accepted it. 

Modern medicine gives the chance of life to so many people and children.
WhenI think about how many of my children would probably not be alive if we
lived 100 yrs ago, it is shocking. But then, I wouldn't have been here
either. (rh blood factor for my mother) 

I think what is wrong is when society uses health care as a way of filtering
who lives and who doesn't live. Today we might withhold medical assistance
totrisomy's but who is next? All vulnerable people are at risk. Judging by
the callous and bold way our hospital ended Annie's life I sincerely believe
that it is something done much more frequently that anyone would want to
know. 

My observation is that ending someones life is initially done with
compassion(or so they believe, anyway) For example, the medical professional
might think, "poor little baby with tri 13/18, I am going to make them
comfortable to their death" Eventually, I think this becomes, "how did we
miss this diagnosis prenatally? What is a child of this poor quality taking
up space in a prestigious hospital with the very best of physicians
performing miracles each day? " The compassion is replaced by a bold
annoyance at the child's existence. If the child suffers in death, who
cares?, serves them right, I'll show all  those "right to lifers" what will
happen! 

In Annie's case, we gave the hospital every opportunity to explain. The
boldly stated that they knew she had a trachea that was becoming narrower
each day and didn't tell us, and didn't treat her for corrective surgery or
palliation. I guess they were afraid we were the "life at all costs" kind of
people and legally, would have the law on our side. I would like to think
that they cared that Annie might face horrendous surgery and that she would
suffer needlessly and that they cared more for her that we did to end her
suffering. Unfortunately, the records don't support this possibilty. Nor did
the words or behaviours of the physicians at the meeting. 

I will send you a copy of the slideshow that my daughter made for the
meeting. the last few slides have been changed to reflect the outcome of the
meeting. 

Thanks for your response. 

If anyone else reading this wants a copy of my daughters show, just ask, and
I'll be happy to send it. 

Barb


----------------------------------------------------------------------------
From:  "Jill Husted" <Jill.Husted@xxxxxxxxxxxxxx>
Reply-To:  tri-wings@xxxxxxxxxxxxx
To:  tri-wings@xxxxxxxxxxxxx
Subject:  [tri-wings] Re: hospital education re trisomy ??? -sorry long
Date:  Mon, 27 Mar 2006 08:55:09 -0500
What the Drs did was so wrong. I know when we took my son off the vent one
of his parents HAD to SIGN the DNR papers. They wanted it in writing.  Some
time I think the Dr could have done more. I do believe that Daniels psa
should of been closed by either meds of by surgery. But it was never
mentioned to us that it was not good to be that big. But in the long run an
apnea spell is what he pass away from. He died in his sleep in his own bed
in his own house. We were so blessed to have that much. He was not suppose
to be able to breathe with out the vent. He surprised all of us. The nurses
were so much better than then some of the doctors, but I think that is
because the nurses actually take care of the babies in the NICU. Some of the
Drs just see them as patients. Two of Daniels nurse came to his visitation,
also both of his hospice nurses came too along with the social worker from
hospice. Sorry to babble. I keep meaning to make a list of places where
expecting moms can go to find help to give to my OB. My son was the first
case that they ever had of T-13. They felt so bad that it was missed.

Jill


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

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

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