[tri-wings] Re: introduction

 
HI Colleen, 

Thanks so much for your very kind words. I must say, I had a little laugh
when you told me you have "just" 5 other children because I'll bet you don't
get to say that very often! 

I have thought for a long time, and continue to think about the health
management of our precious gifts. I think it is so important that we know we
did our best with the information at hand. It is for sure everyone here
lovedtheir baby so very, very much and did what was best for them. I agree
there is no point of regrets. 

In our case, the geneticist and bioethicist at the hosp. both assured us
prenatally that our Annie would receive full support and if surgery was
required, it would be considered based on our daughters health alone, not on
the trisomy 13 diagnosis. This was a lie. 

In reality, when Annie presented with respiratory distress they went no
further than disgnosing pneumonia. The refused to do any testing that would
tell them anything else. 

If we knew then, what we do now, we would have taken Annie home immediately
after birth. She would have known only love and tenderness. The prick of a
needle or an IV would never have come near her. It is likely she would have
died in less than 2 weeks of hypoglycemia. (low blood sugars) It probably
would have been very peaceful. 

We were in hosp for 6 weeks battling the hypoglycemia, only for the hope of
afew years of life. If we had known there was no possibility of surgery, we
would never have done that. 

It must sound very odd to say that we would have traded our 80 days in for
only a few. But, the bottom line is we wanted what was best for her, not us.
Of course, we wanted her every second we could, but not at her expense. 

It seems a big part of the choices we make is based on how we receive the
information. I think some geneticists tell parents that there is zero hope,
that it is cruel to try anything, and then there is the famous, "dying with
dignity" (What does that mean??) It is very difficult for loving parents who
have an innate trust of their physicians to make decisions that are thought,
by them, to be cruel. 

In our case, the geneticist told us nothing. Before the fateful ultrasound,
Ihad researched the possibility of tri13/18 based on high nuchal trans
measurement. Then the livingwithtri site started and the beauty of the lives
of those children transformed me. 

Well, I hope to get to know you better in the future Colleen. I would love
todiscuss the effect of this expience on the older children. 

Thank you again for your response, 

Barb  

ps. Do you really live in Hawaii? You lucky dog!!  



  
----------------------------------------------------------------------------
From:  Colleen <springc001@xxxxxxxxxxxxx>
Reply-To:  tri-wings@xxxxxxxxxxxxx
To:  tri-wings@xxxxxxxxxxxxx
Subject:  [tri-wings] Re: introduction
Date:  Fri, 20 Jan 2006 20:12:35 -1000
Hi Barb,

I am sorry to hear about Annie's passing and the difficult
circumstances surrounding it and the problems with the medical support.
   I'm so glad though that you had at least 80 days with her.  We had 34
wonderful hours (which doesn't seem like enough but then there are many
who have had less) with our sweet Gabriel.  How wonderful that you have
nine other children.  We have just five others (the oldest is 19 and
the youngest is 6).  I come from a family of ten, and my husband from a
family of eight.  My mother and oldest sister were pregnant together
when she had me (I'm her ninth and youngest natural child--she adopted
number ten).  I was the same age she was when pregnant with me when I
was pregnant with Gabriel (44) so I had high hopes that everything
would go well.  In retrospect though, I feel that in most ways things
did go well--I feel so blessed by every minute of Gabriel's life and am
so glad that he is in our family even though his birth and death
involved so much sorrow and pain and we long so much for him.  I have a
strong belief that we will know him once again in the next life and
that our family relationships will continue to develop then.  I do
worry about what we might have done differently--but know in part that
it is a natural part of the grieving process.  I have also learned
things since his death that made me wonder if we could have done more.

Take care.

Colleen


Wife to Paul, mom to Austin (19), Noelle (17), Ethan (11), Isaiah (8),
Truman (6), and Gabriel (9-15-05 - 9-16-05)

                   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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