[tri-med] Re: 27 weeks pregnant with T18

Thanks to all who responded to my original email.  Your support has helped me 
in deciding what to do for our baby girl.  I think it just took awhile to 
process the diagnosis and information given to us at the beginning.  Shock can 
be a horrible thing.  We became very tunnel-visioned about the future, but now 
we have realized that we may have possibilities and options that were never 
explained to us.  I think that has been the trouble, that our doctors have not 
been straight forward with us, and they seem to have us running in circles 
between doctors.  
So no matter what is to come in the future, I think we are now on the right 
road to learning and planning what we need as a family to make it through this 
journey.  I hope I can rely on you all again in the future if needed.  It's 
nice to know we are not alone!

(((Hugs))), Kathleen




________________________________
From: T18 Mom <t18mom@xxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Tuesday, March 10, 2009 11:58:08 AM
Subject: [tri-med] Re: 27 weeks pregnant with T18

Kathleen,

We also knew about Matthew's diagnosis while I was pregnant and we also put
together a birth plan. It really did amaze me how often doctors gave their
opinions on what we should do. I really like what someone said about calling
your baby by name (which we did)...it seems that health care professionals
need to identify to our little ones on that level and not as medical
statistics...statistics that are clearly and often defied. Like someone had
said, but I'm sure you have thought about...it would be good to know what
types of things you might be dealing with when your baby comes so you can
put together what your preferences would be.

Don't be afraid to speak up when you feel it is necessary, many times we as
parents are our children's only advocates. The doctors (though many of them
great) don't know it all when it comes to you and your child.

Special blessings to you,

Ruth, wife to Rudy, mom to Brendon (24), Scott (20), Joshua (17), Matthew
(09/13/01-10/24/06), Rudy (4 1/2) & Alyssa (2 1/2)

http://members.cox.net/t18mom/Matthew%20Web.shtml

Character cannot be developed in ease and quiet. Only through experience of
trial and suffering can the soul be strengthened, ambition inspired, and
success achieved. ~Hellen Keller



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Kathleen Hards
Sent: Monday, March 09, 2009 10:08 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] 27 weeks pregnant with T18

Hello all.
I am needing some help/advice.  I am considering changing doctors because I
feel like I am getting the run around and that no one really wants what is
best for me and my baby.  I have made the choice to carry this baby to term,
and naturally I have questions about what to expect.  Here's my question to
you all, as a sounding board.  What kind of options were you given at the
time of birth, granted that your baby was born alive and breathing?  Were
some of you offered treatment or surgery?  My doctor is telling me there
isn't much to offer my baby but warmth and possible pain medications.  It is
hard for me to accept that there isn't anything else we can do.  I know
there isn't a magic pill to make the T18 go away, but there are cases were
children live beyond what is expected.  I would really like to hear some of
your experiences and what kind of prognosis you were given.  I just want to
leave the hospital without regrets that I could have done
something more to help my baby.  It's almost as if the doctors are telling
us good luck.  You can hold you baby and wait for her to die.  It's hard to
swallow that this is the typical case for most parents.  May thanks ahead of
time to those who are willing to share.  It is greatly appreciated!!

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

                  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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