FINALLY NEWS on Baelin's Death
oh *deep breath* finally finally finally...after nearly 5months we finally have a somewhat definitive answer on why we lost are darling little boy.
i talked to the coroner today. the gist of it is that it is his belief, from his experience doing this for over 25yrs, that it would not have mattered where baelin had been born. the outcome would have been pretty much the same. he may have survived birth if they had done a crash c-section (if they had realized they needed to do
one...the decels that he had during pushing were all within the range of normal, i'm told by jacque and rhonda, except maybe the final ones and by that point if they had c-sectioned he had already been in my birth canal long enough that the outcome may have still been the same)....but his prognosis for life would most likely not have been good. he definitely had something wrong with his bones. they can't put an exact name label on it...he still thinks a form of osteopetrosis, but no way to know for sure nor which kind....but his bones were NOT normal.
my baby's head was CRUSHED from being born! this sounds just horrible, but it really helps us know this. he did not have the soft bones that babies are supposed to have to be able to be born safely. his bones were very dense and brittle. we had no way of knowing this because its a rare condition they had no way to know to test for. they don't usually xray pregnant women! and that would probably be the only way they could have known...there were no indications of a problem from the ultrasound i had. they can't see the insides of the bones from u/s. it wasn't til the autopsy, when they did a full xray, that they saw this in his bones.
the dr kept saying that baelin's skull "collapsed"...not the normal molding of a normal healthy baby...it was crushed! so he most likely would have had some serious brain damage had he survived the vaginal birth...and if he had been c-sectioned...he would still have the bone disorder which caused the dense, brittle bones in the first place...so he may have survived the birth but his life would probably have been short and painful. prognosis for this sort of disease is
not at all good when its severe, as his obviously was. the lesser form of this disease can go unnoticed for decades...but baelin's was severe or he wouldn't have died from it.
so there you have it. thank god it wasn't anything to do with choices we made. you can't help running the "what-ifs", ya know? but i've run these what-ifs to the ground this morning and i keep coming to the dr's specifically saying that it is his professional opinion that this baby would have died regardless of where or how he had been born. he kept telling me that my baby was NOT normal. he couldn't say
EXACTLY the cause of death in the sense of a specific name for the disorder but it was the bone problems, for sure. *big exhale*
he also said we need to go in for genetic counselling to determine if we are at risk for having another child with this disorder. i'm just so glad to finally have an answer!! i'll do whatever it takes to get through the next pregnancy...but finally FINALLY we can say WHY baelin died!! the question marks are just excrutiating!
thankyou all for all your support...its not over yet by any means and our emotions will continue to roller coaster and we will ALWAYS miss our baby boy and wish he could have been healthy and whole...but to now know WHY he died will really help us to start to heal more, i think. and it came with perfect timing because i just completed my 3rd cycle and we are ready to start trying to get pregnant again. its going to be a scary ride, but i know i have the strength for it because of my wonderful husband, family and of course all of you, my friends.
and on a side note...i want to share also that i was told by someone who is touched in a way to know...that baelin did not suffer...whether you believe in this sort of "knowing" or not, i have just gotten a huge comfort from this message. i am told he had someone with him in the end that helped him in the transition over
and i don't know who that was, but i am eternally greatful and the thought of all this just makes the tears flow this morning.
tina
mommy to maeven, 3.75yrs and baelin, stillborn 4/04 at 41.5wks due to
bone disorder
i talked to the coroner today. the gist of it is that it is his belief, from his experience doing this for over 25yrs, that it would not have mattered where baelin had been born. the outcome would have been pretty much the same. he may have survived birth if they had done a crash c-section (if they had realized they needed to do
one...the decels that he had during pushing were all within the range of normal, i'm told by jacque and rhonda, except maybe the final ones and by that point if they had c-sectioned he had already been in my birth canal long enough that the outcome may have still been the same)....but his prognosis for life would most likely not have been good. he definitely had something wrong with his bones. they can't put an exact name label on it...he still thinks a form of osteopetrosis, but no way to know for sure nor which kind....but his bones were NOT normal.
my baby's head was CRUSHED from being born! this sounds just horrible, but it really helps us know this. he did not have the soft bones that babies are supposed to have to be able to be born safely. his bones were very dense and brittle. we had no way of knowing this because its a rare condition they had no way to know to test for. they don't usually xray pregnant women! and that would probably be the only way they could have known...there were no indications of a problem from the ultrasound i had. they can't see the insides of the bones from u/s. it wasn't til the autopsy, when they did a full xray, that they saw this in his bones.
the dr kept saying that baelin's skull "collapsed"...not the normal molding of a normal healthy baby...it was crushed! so he most likely would have had some serious brain damage had he survived the vaginal birth...and if he had been c-sectioned...he would still have the bone disorder which caused the dense, brittle bones in the first place...so he may have survived the birth but his life would probably have been short and painful. prognosis for this sort of disease is
not at all good when its severe, as his obviously was. the lesser form of this disease can go unnoticed for decades...but baelin's was severe or he wouldn't have died from it.
so there you have it. thank god it wasn't anything to do with choices we made. you can't help running the "what-ifs", ya know? but i've run these what-ifs to the ground this morning and i keep coming to the dr's specifically saying that it is his professional opinion that this baby would have died regardless of where or how he had been born. he kept telling me that my baby was NOT normal. he couldn't say
EXACTLY the cause of death in the sense of a specific name for the disorder but it was the bone problems, for sure. *big exhale*
he also said we need to go in for genetic counselling to determine if we are at risk for having another child with this disorder. i'm just so glad to finally have an answer!! i'll do whatever it takes to get through the next pregnancy...but finally FINALLY we can say WHY baelin died!! the question marks are just excrutiating!
thankyou all for all your support...its not over yet by any means and our emotions will continue to roller coaster and we will ALWAYS miss our baby boy and wish he could have been healthy and whole...but to now know WHY he died will really help us to start to heal more, i think. and it came with perfect timing because i just completed my 3rd cycle and we are ready to start trying to get pregnant again. its going to be a scary ride, but i know i have the strength for it because of my wonderful husband, family and of course all of you, my friends.
and on a side note...i want to share also that i was told by someone who is touched in a way to know...that baelin did not suffer...whether you believe in this sort of "knowing" or not, i have just gotten a huge comfort from this message. i am told he had someone with him in the end that helped him in the transition over
and i don't know who that was, but i am eternally greatful and the thought of all this just makes the tears flow this morning.
tina
mommy to maeven, 3.75yrs and baelin, stillborn 4/04 at 41.5wks due to
bone disorder
posted by Tina at 7:40 AM
0 Comments:
Post a Comment
<< Home