[tri-wings] Re: tri-wings Digest V8 #146

Barb
 
I was very lucky when I was pregnant with Connor that I was able to attend a 
SOFT conference while I was pregnant, so I had a real glimpse into what I was 
taking on.  I can also understand families who say they can't cope with that, 
but I don't think it means the little one has any less right to treatment if 
they are born.  In some cases families do walk away and the children go to 
foster or adoptive families, but whoever they live with, if they have a 
fighting chance of life they should be given it.  Its just another opt-out the 
doctors can use to justify withholding treatment.  
There is far too much on personal values of the professionals involved; i.e. if 
they believe they wouldnt want THEIR child to live if they were disabled, they 
apply that to everyone. I've always believed that you can only theorise about 
that question, until it happens to you.  We all know what we think we might do, 
but its all theoretical until you are actually in the situation.  So noone is 
in a position to judge.  
 
We tried to set up a visiting scheme in our local hospital where families would 
immediately be put in contact with a charity who could arrange for them to meet 
with a family with a child with the same condition.  Therefore providing some 
experience of the situation they might find themselves in.  But they wouldn't 
allow it because the families would not be professionally trained.  Bloody 
ridiculous - who are the experts after all!
 
Demi > Demi,> I have suggested that when parents decide that they want to give 
their unborn > baby a chance.....given the situation once they are born, that 
it might help if > it is recommended that such parents spend some time 
volunteering for respite > care or spend time at a home for kids with 
development issues. This would help > to convince the staff that the parents 
are fully cognizant of the challenges > that lay ahead and that they are making 
a fully informed decision. > 
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