[tri-wings] Re: hospital education re trisomy ??? -sorry long

Hi Barb I have been wanting to reply to you for a while but I am sorda a 
lurker. My sister is not ready to talk about her son's death so I am worried 
she 
might see me on this site talking about him and I don't know if it would make 
her mad or not. Dealing with her grief is hard I don't want to upset or hurt 
her in any way. I am an aunt of a recent trisomy angel I don't know if you 
remember me or not my name is Stacy and my nephew Jamin died of central apnea 
while 
in the hospital with a lung infection. I just wanted to say I agree with 
everything you said about how most doctors feel about Trisomy babies. What a 
shame!! I asked this when we were fighting to save Jamin from these type of 
doctors 
but I will ask again...What can we do to change this? You know they say this 
is a rare chromosome disorder but the funeral director told my sister it was 
the fourth child she had buried in the last 3 months with the same thing how 
can that be rare? It makes you think how many babies have died with trisomy 13 
that we don't know of solely because of the doctors in a way tricking the 
family? They tell you how horrible the babies lives are going to be and 
basically 
try to make you feel bad for keeping them alive and fighting for their lives. 
Maybe in a lot of cases these babies do have a really hard time but why can't 
they be given a chance too. When a baby has cancer do they simply make them 
comfortable until they die NO they do everything in their power to save them 
and 
not think twice. Those children don't live wonderful pain free lives. Sorry to 
ramble but I feel very strongly about this and I talk to anyone about it that 
will listen. I may have just been his aunt but I loved him like my own before 
he was even born!
Hang in there and I say keep fighting for people to listen. I am so sorry 
that you lost little Annie especially in the way it happened you must feel such 
a 
betrayal! I've been  reading your story for a while and my heart aches 
everytime I read it because although Jamin didn't die like your little Annie I 
feel 
if he did get past the apnea his doctors would have been the same way they had 
already given us many hints in that direction. 

Lots of hugs!!!
Stacy


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

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