[tri-med] Re: Baby Faith and surgery

----- Original Message -----
From: "Wendy Hagen" <wendyhagen@xxxxxxxxx>
Subject: [tri-med] Baby Faith and surgery


> Do you  know where I can find a full trisomy 13 case with a successful
> omphalocele operation? I am having a hard time even finding any Trisomy 13
> babies with the omphalocele.

Hi Wendy and welcome :o) I'm Penny...I live in FL with my husband Joe and
our 2 boys...Nicholas (12 yrs Nov23) and Devon (7 yrs). Devon has Full T13
w/BALANCED translocation 5 and 13. I know of at least 1 baby girl with Full
T13 who lived in TX...she had successful surgery right after birth for an
omphalocele. Sadly...Kelli (The Bunny Princess as she was lovingly known as)
has gained her bunny angel wings (due to other health issues). She was 3 yrs
old I believe when she passed away. Is Paul (Kelli's daddy) still on this
list Karen????


> Did any of you out there have a baby come out that needed to be intubated
> right away and then went through surgery and survived and came home?


Wendy...although I know that of all the families I've either met and/or
talked to, that there have been some who've been intubated and had surgery
right away and lived to come home...but I'll be dipped if I can remember
exactly who they are right now??? I'm sorry about that :o(


> So many people say,"Oh at least you know about her condition beforehand.
At
> least you can prepare for it. At least you were not expecting a healthy
> child and then at birth you find out she is not." Don't you love the "at
> leasts"?


Yep...I have a few pet peeves with what people say to me. Most believe that
because Devon is healthy and doing very well that he's going to be here
forever. When I'm having one of my gray periods where I'm thinking about
"the inevitable" (it could be tomorrow or it could be when he's 40)...I
watch who I say anything to about it because it makes me want to spit nails
when I say something about losing Devon and they say something
like..."well...anyone's child could die"...I want to scream at them
"YES...that may be true...but with Devon IT'S A MUCH MORE REAL
PROBABILITY!!". Or if I'm concerned when he's sick (I get more scared when
he's sick then when Nick is sick)...some people say something like..."oh
he'll be fine...you worry too much"...as if they think I'm being some
ridiculous, brainless twit worrying about nothing. I'll admit to possibly
worrying "about nothing"...from time to time...but it's based on very real
fears.


 I find this uncertainty and decision making process so difficult
> -especially when my husband and I disagree. I don't want to give up on
her,
> but I also don't want to be unrealistic & I don't want her to suffer only
t=
> o
> die in the midst of it.
> Thanks for you support and suggestions.
> Wendy

I don't know that the decision making gets any easier Wendy :o( It's even
harder if you and your husband aren't on the same page...AND it's VERY hard
trying to be hopeful but grounded at the same time!  I can truly relate! I'm
not a good person to talk to in a lot of ways because I live with Devon and
he's a very happy and thriving little boy...and I can't even think about not
doing absolutely everything possible to sustain his life in the event that
he should become ill or injured...and he has had at least 4 surgeries to
repair things! BUT...there ARE situations in which I would want to
administer "comfort care" and make him comfortable and let go if it became
necessary. When a new mom or day calls me I walk a fine line...I don't want
to give what some would term as "false hope" but on the other hand...I want
to convey to them that they shouldn't give up on their child before giving
them a chance simply because I KNOW that had we believed what the doctors
all promised for Devon as absolute gospel, Devon would not be doing even
half of what he is doing. I have also talked to many who have been told
prenatally of the presence of certain health issues and when the child was
born some of these things were either not as severe as what they were
originally told...and some things have even resolved and were no longer
present at birth. I'm also not totally convinced that knowing ahead of time
is better??? I can see that knowing of certain health issues ahead of time
might be helpful so a parent could have the proper specialists on hand to
handle it when the baby is born. But we didn't know about Devon's T13 before
his birth...and I know with absolute certainty that had we had his dx while
he was in the hospital right after birth that his care would have been
treated very differently (by the doctors and nurses) than how it was
actually handled simply because of the medical community's limited
experience with children with T 13. I really believe that in Devon's
case...they took an aggressive approach to his care because they thought he
was a "typical" baby with serious health issues as opposed to a baby with
T13 with serious health issues....if that makes any sense???
I'll keep you all in my thoughts and prayers for peace and strength...and
please keep us posted on Faith and your family :o)
Love,
Penny...devoted wife to Joe and "Mom" to Nick (11 1/2 yrs...lover of Harry
Potter, Pokemon, Fishing, Legos, Zelda, Popcorn Chicken, Pizza, cheese
sticks and chocolate icecream w/ovaltine sprinkles) and "Mommy" to Devon
(AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and the
Muppets, Stuart Little, Barney, Blue, Pooh and Co. and food in general, 7
years old (6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and
13)... KC (the feline child...Brat gained her kitty wings 7-09-02 she was 16
years old +), Snitch and Lil' Dude (Nick's turtles :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

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

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