my aunt was born at ( i think) 33 weeks weighing 1lb 4 oz.
she was resuscitated 3 times, once by dipping her into peroxide (this was the 60's)
she has severe brain damage as well as the downs syndrome she would have had anyway, and is deaf.
There have been many many times when my grandparents question whether the Dr's were right in resuscitating her. they have questioned whether it would have been kinder, given her quality if life to have just let her go.
Both my grandparents are now dead, and my aunt lives in sheltered accomodation which she enjoys.
My grandparents did, at the time what they thought best for their baby. when your sitting lookign at a tiny baby your only thoughts are for the Dr's to do whatever is possible to keep her alive.
I don't get repsite because qite frankly i don't trust anyone else to care for my son properly. i thin as a SN parent you get so defensive of your children that letting go is harder than normal. (or atleast it is for me)
do you think my grandparents should have considered the fact that when my grandfather died aged 76 my aunt would have been cared for by the state? do you thin that they should not have continued with her care for that reason?
i know there will be people out there telling me that this is different but no, actually it isn't.
You cannot possibly plan for the rest of your child's life as. hopefully you wont be there to see it all.
I can relate to this story on so many levels that yes it is quite raw for me and yes i do have enormouse empathy for these parents.
my own knowledge of SN is more than mosts and yet i still cannot even begin to imagine what their lives must be like.