this is from discussions on that page
we were first told of her condition at my 12 week scan and was offered a termination, it was confirmed again at 15 weeks and another offer of a termination. i booked in for one but the next day changed my mind...i couldnt put myself through it again.( i lost my daughter alex to a med termination in 2005, she had severe arthogryposis)..So 19 week scan came and again theoffer of a termination..we decided we would let nature take its course as by this time i had met several families with enceph children who are doing amazing. At every appointment after that we were reminded she was not going to survive. inally managed to get a fetal mri..but were never really given the results..except ..its bad she not going to survive..so csec booked for 4th jan..kaitlyn had other ideas and came on new years eve..she needed no breathing support...since then the only help she has is a feeding tube. the docs agreed to another mri and we have bee told her head is too small to replace her brain, the brain stem is near the edge of her skull and as more pressure builds up on it it will stop working and she will die. they feel they are unable to operate without her dying on the table. we are to take her home for as long as she is with us. this i can accept but that doesn mean i wont get a second/third/fourth opinon from anyone willing to give one, she is my daughter an if i was willing to give up on her i would have done so 6 months ago..not now.today she is 1 week old