[tri-med] Re: my grandson Van

----- Original Message ----- 
From: "shea barja" <bsbarja@xxxxxxxxx>
 I haven't even told you all about our situation, it's been such a whirlwind 
around here.  Van's condition came as a complete surprise (born vaginally 
October 4th), my son and daughter-in-law's first child.  His major issue is 
his heart.

That intial 'shock and awe' portion of the introduction to the land of 
triosmy is a VERY emotional and draining time. You feel like you've applied 
to college and on your first day it's final exam for graduation.

It's takes a while to catch ones breath, gather information, have 
discussions on what course of action to take and try to 'have a life' all at 
the same time.

But it does get better!

>  Right now I'm majorly stressed because a visiting nurse told my son and 
> his wife that she had taken care of three Trisomy 13 babies and that the 
> longest one ever lived was four weeks.

Not a lot of tack from that nurse!
However, she probably thought that by sharing her personal experience she 
was doing her job in helping your family deal with the situation. 
Unfortunately her experience is more the rule than the exception.
Surely she was reiterating what you are being told by the medical community 
as well.

It's a lot of gloom and doom for most upon receiving the trisomy diagnosis. 
It only seems to change when the child continues to live for a longer period 
of time than they could ever have imagined.

Makes it hard for some folks to get the appropriate medical treatment for 
their child. But that's another topic of conversation!

Welcome to the list and congratulations on the birth of your grandson Van.

Michelle mom to Alex (19, partial trisomy 14 mosaic) and Molly (15)
MichiganUSA 


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

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