[tri-med] Re: life excpectancy

I wonder how much of that is because these kids  
> just couldn't survive versus didn't get the chance to survive (before  
> or after birth)! It's a sobering thought.

Loren your comment made me think of something that I though would be 
interesting to share. 

I suppose all of you are familiar with the growth of "perinatal hospices", 
especially in the US. (in Canada, we like to emphasize search and destroy and 
sadly, is seems that many key figures in the Catholic church is on board with 
that...but that's another topic)

What I have found with perinatal hospices is that they are a breeding ground 
for perpetuating the myth of universal futility. 

They are so focused on beautiful deaths that many are not aware that some 
children actually live and can benefit from surgery. 

I think that the work these groups do, especially in terms of prenatal support, 
is incredibly great, but they have just lost sight that not all kids die. So 
many could be saved by premature apnea (caffeine works for some, I hear) or the 
tri 13 babies often have severe hypoglycemia that will cause death and is 
easily treated. 

I remember the first doc I spoke to on the phone from the US on hospices. I 
asked her if any of the babies in her perinatal hospice ever rec'd life-saving 
care. She was clearly stunned by the idea. She was a very lovely person, 
without a doubt, but the idea had never crossed her mind. Imagine that! She 
said she was not opposed if the baby was mildly afflicted but in her 
experience, none of them ever are. 

Another very lovely person in perinatal hospice in Michigan was so kind that 
she offered to drive to our city to meet with the appropriate people here and 
help get a hospice underway. She sent along a very nice and professional power 
point on the topic but it was very clear....tri13/18 was universally lethal and 
"incompatible with life". I sent her information (lethal language article) and 
probed a little more and she ceased to write back. 

Barb



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