Sun Jan 4, 2004 7:34 am
doyleew@aol.com
doyle_propst
Re: CDH Research
Karen,
I am so sorry that William joined our angel cherubs, like my Cecilia
did, for
the first year after her death I prayed every day there would be NO
more
infant deaths from anything. (It didn't happen.) Also know there is
a grieving
listserv with CHERUBS and sometimes it helps to "be with" people who
have
walked the road you are on now - though all are different.
We were lucky, we were given three options, one being to terminate -
but it
was the last option given and only mentioned to me when my husband,
Brian, left
the room. In 1999, we were told of the fetal surgery at CHOPs that
was being
done and also having our unborn child at a hospital equipped with ECMO.
We
chose the latter, and I too - would never change my choice, my life
is better
from knowing Cecilia.
To help other doctors and health professionals - print out the pamphlet
for
cherubs and parent reference guides and send them to as many OBs, Hospitals,
Birthing Centers as you can - try to find out if they have a fetal
diagnostic
center - and send them to that department - if you get NAMES it is
best. Write
a note about the advances that have been made over the last 10 years
- heck,
20 years and that the odds are increasing for survival.
I must confess, if Cecilia had positively come back for something else
with
the CDH, I might have opted for termination. Her favorite nurse, Tracy,
told
me and Dawn T. that she would have the baby if it had only CDH, cry
a whole lot
and hope. I also know if it had something else - no brain, a heart
that
couldn't sustain life - sometimes that would be very cruel to try to
save. I
wish
they would give an option of having the babe - and also having a do
not
necessitate order in cases like that.
It isn't an easy decision and I support all parents in the personal
decisions
they make for the health of their children.
I hope this helps you - and feel free to contact me personally if you
need to
at doyleew@aol.com
Hugs,
Elizabeth, Proud Mom of Cecilia Winn Propst, 11/2/99-12/10/99, LCDH,
O2, N0,
ECMO 32 days (UVA's record holder), Gortex Patch Repair, Silo Patch
to final
closure, renal failure, hemophiltration through ECMO pump, 1st infant
on CVH
for hemophiltration, pulmonary hemorrhage
http://hometown.aol.com/doyleew/myhomepage/index.html