[tri-med] Re: Newly Diagnosed Trisomy 18

Hello Rory!  I, too, am glad you found the list, just hate the reason you are 
here!

We had a prenatal diagnosis with my daughter Anna.  I really know nothing 
about diaphragmatic hernias, and so don't know the seriousness of it all.  As 
someone else already wrote, no one really knows what is in store for your 
precious Caris.  Is the surgery one that would be done after Caris was born?  
We had relatively aggressive birth plans for Anna, wanting the docs to give 
her every fighting chance to experience life outside my womb.  This was based 
on the information we received from them on her medical condition, which at 
the time, by the way, was excellent in utero.  We told them that after she 
was born, we would re-assess her medical condition and make further plans 
from there.  Just for your information, our perinatologist looked for a long 
time for heart problems with ultrasounds, but never detected them.  When Anna 
was born she had a VSD and ASD.  

Anna lived with us for nearly 3 months, with very few medical complications.  
She died very suddenly one Sunday afternoon.  We were not faced with the 
question of surgery, and I'm not sure what we would have decided.  The 
important thing to keep in mind is that whatever you and your wife decide, 
given the information provided by your medical team, will be the right 
decision for Caris.  Already I can see the love you have for her..........as 
my perinatologist wrote in a sympathy card after Anna's death, "Surely she 
knew more love in her short time than many have known in their entire 
lifetimes!!"  I think the same applies here.

I don't know if I was much help.........just know that I remember what it 
felt like to have these grim outlooks for my baby and my heart goes out to 
you and your wife!!  Continue to ask questions here.........someone here for 
sure has BTDT.!!

Take care.
Ceci, wife to John, mom to Maria - 18, Joe - 6 and Angel Anna, T-18. 9/22 - 
12/13/98
Frankenmuth, MI  USA


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