Originally Posted by alegna
I'd be interested if you have any links that show that there are currently in-utero surgeries being done routinely (not as part of a study) as when I tried to research it I didn't find any. (I'm sure I could have missed them though!)
no, you're right; i can't find anything that "proves" that surgery or even other medical interventions are being done routinely. that's true. however, i don't even know what would constitute routine treatment of a birth defect that occurs in only 1 out of every 40,000 live births. and not every baby born with eagle-barret syndrome is a canidate for surgery. so, sadly, i personally have no idea how to determine what is routine treatment once a couple decides not to terminate pregnancy (which, it seems based on my very limited reading, may be the norm.) i'd be interested (i like this thread and it's many layered issues, too, Full Heart...hopefully the op doesn't mind my digressions.) to know what does constitute routine care versus experimental care. (and how extensive your research was, too, angela.) i'm sure there are those who consider ultrasound itself to be still in the experimental stage and yet it seems to be clearly used routinely. due to the fact that, at least in the u.s., there is no national system to track birth defects or to note various trends on how and when they occur, and
that in the states that do report birth defects the reporting is only done passively and are not random samples, i'm not sure there is a way to determine even prevalence, let alone what routine treatment entails. (pretty convinent for a county that pumps out 85,000 different synthetic chemicals every year not to have a national birth defects monitoring program, huh?)
and while i admit you fully got me on the routine thing
, i still contend it's misleading to say there are currently no birth defects being treated in-utero. in my opinion, or maybe more specifically, for me to make a decision, informed consent requires that i accept and digest the full range of possibilities. mothers are currently taking medications to treat rare disorders before birth, routine or not. knowing of an incredibly rare defect that is possibly treatable if detected and acknowleding and accepting that, is part of my decision to forego the u/s. maybe i'm a bit on the dark side or too much of a pessimist, but if i can't find one counterexample, i don't feel like i have the whole story. i know statistically outcomes are not improved with use of routine ultrasound; but i can't seem to base my decision solely on that info. i need stories and lives and slow, s-n-a-i-l slow mulling it over.
and i happen to know at least 20 healthy babies and children who i am close to whose mothers chose not to have a routine 20 week ultrasound, if my personal experience were more like sophiecat's i would allow myself the room and time to make a careful and deliberate choice all over again.
and i think Meli65 has the beat advise of all: what will you do with the information? i think that question can help you decide not only what to do, but help you determine ahead of time where you may fall on the whole peace of mind spectrum. i've surprised myself over and over again with this prenancy that i just get more "hands-off" and while i have great concern for the babies who are struggling with these rare syndromes, somehow, unlike with my daughter's pregnancy that concern doesn't migrate over to my own belly. weird.
and if anybody wants links to eagle-barret stuff randomly out of curiosity or is wondering where i pulled the 2%/80% stuff from:http://www.cumc.columbia.edu/news/jo...17n2_0021.htmlhttp://rdu.news14.com/content/health...2404&SecID=376http://www.emedicine.com/med/topic3055.htm
again, just stuff i stumbled across trying to make a decision, not scientific research by any means.
i promise i'll be quiet now.