[tri-med] newbie/neural tube defects

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)

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