[tri-med] Re: Our baby

 
Hi Samantha, 

I wanted to ditto Irene's words about U/S results.  We were told my daughter
had a borderline hypoplastic left heart via 3 echos as an excellent
pediatriccardiac facility. When she was born there was no sign of it. 

We were also told that she had a dandy walker brain cyst- again it wasn't
there after birth. 

I have to think that things develp differently in some kids with genetic
factors. 

Barb   mom to Annie 05/25/05-08/12/05 



  
----------------------------------------------------------------------------
From:  "Irene Smith" <67.irene@xxxxxxxxx>
Reply-To:  tri-med@xxxxxxxxxxxxx
To:  tri-med@xxxxxxxxxxxxx
Subject:  [tri-med] Re: Our baby
Date:  Thu, 31 Aug 2006 09:49:50 -0400
Hi Samantha,
My daughter Caroline didn't have the findings your baby does, but one thing
I do want to mention is that u/s findings are not always correct.  Even
after multiple "experts" review them.  My Caroline had muliple findings, the
FISH test came back negative, but 2 weeks later, the final amnio results
confirmed a rare chromosome abnormality - she has an extra part of her 17th
chromosome.  It was the hardest more difficult time of our lives.

We had NUMEROUS u/s and fetal echos during this pregnancy as they were
confirming a hypoplastic left heart.  We were seen by numerous top drs at
Pittsburgh's Children's hospital.  They were positive she would not make it
to term, she would not survive birth and she would definitely not survive
her first year.  If she did happen to survive, they were 100% positive she
would need major surgery upon birth to fix her heart.  But, 3 years later,
she is still here, she hasn't had any heart surgery yet and she is doing
better than anyone could have imagined.  She definitely has her share of
issues, she is severely delayed and we know she probably won't survive into
old age.  But we love her, she is a sweetie and she has taught us so much.
We NEVER thought we could handle such a child, but we do!

What really bothers me is how many times the ultrasounds can be wrong.  Yes,
sometimes they are right on, sometimes things are actually worse, but
sometimes they are much better!  Please remember that and don't take
everything they tell you as hard fact.

Please take care, and feel free to ask as many questions as you want to the
list.  This list is wonderful and a Godsend.  There is always someone here
who has been there/done that and can offer some words of advice.

Irene
Christina (4), Caroline (3 with partial trisomy 17p) and Kallie (1)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith

On 8/31/06, Samantha Stanley <sandala27@xxxxxxxxx> wrote:
>
>Hi -
>   I wanted to introduce myself, and our story, so far.
>   My husband and I found out on Mon, and our Level II, that our baby has
>many abnormalities...including the following:
>   ~VSD
>   ~Hernia in diaphragm
>   ~two vessel umbilical cord
>   ~clenched hands
>   ~club foot
>   ~several cysts in the brain
>   We were told then that they think it is Trisomy 18.  We instantly spoke
>to my OB/GYN, and he suggested we see a high risk dr, and possibly get an
>amnio.  We did this yesterday.  The high risk dr confirmed all of the
>findings, and even gave us worse news.  The hernia has caused all of the
>organs to be pushed into the chest, causing the heart to be pushed to the
>other side.  It is being squished.  She also said that there is fluid
behind
>the lungs causing more pressure on the heart, and that inevitably, this
baby
>will suffer from heart failure.  We opted for the amnio, and should get the
>FISH results in a few days.  We even asked to know if the baby is a boy or
a
>girl, and they said it was unclear...so we are hoping to find out from the
>amnio results.
>   I (and my husband) are just wondering if there is anyone out there whose
>baby had the same symptoms, and what happened.  I have been reading SO
>much...and have yet to find someone who's baby had ALL of the things our
>baby does.
>   We just don't know where to go from here...and are looking for some
>support.  Our hearts go our to all of you who have suffered a loss, and
also
>to those who are in similar situations to us.
>   Thank you in advance for any support, advice you may give us.
>   :) Samantha
>
>---------------------------------
>How low will we go? Check out Yahoo! Messenger's low  PC-to-Phone call
>rates.
>
>                   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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