[tri-med] Re: newbie/neural tube defects

 
Hi Becca, 

I admire your courage and faith. You are quite right, I believe that these
children have a special purpose and reason for being. Have you discovered
thewww.livingwithtrisomy13.org[1] site yet? 

My own experience is that every defect was amplified before birth. For
example, our Annie had retrognathia which means a recessed chin. The
neonatologist descibed a situation in which our baby would be choking on her
own tongue and may even need a device to prevent this from happening.
Anotherexample is that we were told thru 3 prenatal echocardiograms (at the
best ped. cardiac centre in Canada) that our daughter had borderline HLHS
andsevere coartation of the aorta. The best case scenaro was cardiac surgery
by 1 month. 

When Annie was born, I couldn't really tell anything about her chin and the
HLHS was gone and there was no coartaction of the aorta. It was too good to
be true. 

Our hospital has a hidden agenda when it comes to our trisomy kids. They
willnot provide surgical treatment or do diagnosis for possible surgery
except that they won't tell you that. Annie died within 24 hours of hospital
admission at the age of 80 days from respiratory distress. A DNR was ordered
without our knowledge or consent and the final medication report, even
thoughit is computerized, can't be found. The coroner is presently reviewing
and has found the case to be "long and complex". 

  

You just never really know what will happen and so you just have to be
educated and be prepared for everything and grateful for everyday. This site
is great for asking question and if it is a serious medical question and you
need a quick answer you will recieve many points of view or experiences
quickly. I would suggest that you find a physician whom you can trust and
develp a relationship ASAP. 

All the best! 

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


----------------------------------------------------------------------------
From:  "Rebecca Leonard" <beccaleonard@xxxxxxxxxxx>
Reply-To:  tri-med@xxxxxxxxxxxxx
To:  Tri-Med@xxxxxxxxxxxxx
Subject:  [tri-med] newbie/neural tube defects
Date:  Thu, 26 Oct 2006 17:35:53 -0700
Hi everyone,

I have been lurking about for a few days and wanted to introduce myself.  My
name is Becca, husband is Larry, we are expecting our first child <insert
name here> who is 23 weeks along.  He was diagnosed with full Trisomy 13 at
20 weeks.  We fully believe that God knit this child together in my womb,
that he is fearfully and wonderfully made, and that God has purposed this
for us, our little boy and for His own glory.

As we are learning more and more about this diagnosis I am so appreciative
to have you all as resources!  We've met with a dysmorphologist and genetic
counselor, and understand that with the nature of the defects our boy has,
his prognosis is bleak...but I am certain that you all received similar
news.

My question for you all is: did Trisomy of any number result in spina bifida
in any of your children (or grandchildren, nieces, etc)?  I have read lots
of stories and have not seen one mention neural tube defects.  Our little
one has quite the uphill battle with a severe case of spina bifida, in
addition to his heart defect (currently labeled as "suspicisious HLHS with
VSD" and possible common truncus arteriosis -- we will see a pediatric
cardiologist in a few weeks to further assess the heart condition).  His
cleft lip and extra digits of course are the least of our worries!  : )

We made it very clear from the first sign of anomolies that we would not
terminate.  SO FAR, the medical community has been very supportive, easy to
work with, and efficient.  My understanding from them is that his condition
is "severe" (as if they aren't all severe).  As we start to consider after
birth care, we are trying to guage for ourselves if they are just trying to
paint a very true and realistic picture, or if they want to keep from giving
us false hope, or...??

We will be very happy if our little trooper is born alive, and plan to
cherish every second with him.  But for now we will enjoy him in his little
aquatic wonderland of my belly.

Any insights you all have are appreciated!

Becca
"Do not worry about tomorrow for tomorrow will worry about itself. Each day
has enough worries of its own" (Matt.6:34)

_________________________________________________________________
Use your PC to make calls at very low rates
https://voiceoam.pcs.v2s.live.com/partnerredirect.aspx

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



----------------------------------------------------------------------------
Say hello to the next generation of Search. Live Search ? try it now.[2] 

--- Links ---
   1 http://www.livingwithtrisomy13.org
   2 http://g.msn.com/8HMBENCA/2737??PS=47575
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: