[tri-med] Re: New to list-please help

lisa,

i am in a similar situation, as our baby was diagnosed with full trisomy 13 
at 20 weeks gestation (we are now 23 weeks).  i cannot speak from the 
perspective of one who lives every day with a child with any sort of 
trisomy, BUT, i can speak as someone in a similar situation, who has also 
been scouring the internet for facts and insight!

i agree with everyone else's responses, that only you and your husband can 
make the decsion of whether or not to carry to term, however, these are a 
number of factors that contribute to our family's peace with our decision to 
go to term (or as close as we can get).

-although trisomy 13 manifests itself differently in every child, our 
dysmorphologist assured us that in most cases there is very little struggle 
and suffering (with apnea or cardiac failure, for example)

-none of us on this list are "severely retarded" (which is only a 
possibility, not a definite), so who is to say that our little ones' quality 
of life will be any less than a normal child?  it is not like a child who is 
only paralyzed and knows that he can't run around like the other kids...does 
a severely developmentally delayed child know of and/or yearn for a "better" 
life?  i can imagine it is hard for the parents of survivors  not to project 
their own hopes and dreams and fears for their child onto him/her...but is 
that how the child feels?

-most importantly, i have not encountered a single person in our situation 
who regretted bringing their child to term.  but whether or not their 
children survived  and thrived, they found it a life-changing experience, 
and not one they would change.  that says a lot.  basically, be it good or 
bad, after seeing these sitess and being on this list, we are no longer in 
ignorance as to the possibilities for the children we are carrying.  they 
may die...but they may survive!

you will be in my thoughts and prayers.

becca, wife to larry, mother to Nathan David (due Feb 21) full T13, and 
furbabies samson and delilah

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