You are all amazing! Thank you for your very thought-provoking comments to my diatribe.
Holley ~ You are exactly right and I hope you don't mind if I adopt your words as my new motto...People never get smarter or stronger if they are given no information.
Sweetcoalminer ~ No worries. Your thoughts are honest and fair. I have a whole lot of thoughts about lawyers and the legal profession as it relates to wrongful death and medical malpractice, not the least of which is my absolute horror at the way justice is dealt away for a certain price. My lawyer may not be happy with me for saying this...but no amount of money will replace our Alex. I am pursuing a lawsuit simply because I want the doctors to KNOW that I know they screwed up. And I want to help protect the next innocent woman who walks into that practice. If ultimately there is no case or there is a case and we lose, I can handle that. But I won't be silenced. I won't ever let them think that they can continue to do what they do because people are too afraid to speak up against them. This is too important. And my dare was not directed at you...but is a general dare to anyone involved in my situation. Go ahead and say I didn't do what a normally prudent person would do. My defense...I did what the doctors told me to. I would love to see the legal spin put on that one.
In no way did you offend me. And I'm sorry I sounded defensive or as though you had upset me. It's difficult to express my emotions accurately sometimes.
My dear friend lauralu ~ I completely understand where you are coming from and I am sorry if I sound insensitive. I often get on my soapbox and can't see when my mouth may have hurt someone's feelings. Of course the naivete of pre-loss pregnancy is something you would long for. All the worry and the stress is not something to take lightly, by any means.
Please understand that my opinion is not purely from a sane, ration, objective level. My opinion comes from the knowledge that my son could very well be alive if only...
While you come from a place where all that preventative stuff was valiantly tried, and ultimately failed, I come from a place where I didn't even know. I didn't have the necessary information because everyone apparently thought it too rare an occurrence to share with me. In fact, I was distracted by the possibilities of gestational diabetes and other accusations based on my being a fat pregnant woman...when I didn't even have gestational diabetes. I tested negative three times for it. What a waste of time that was. What a completely useless exercise. And yet nobody thought to non-stress test my baby when I was so sick and complaining of symptoms. It simply boggles my mind...and pisses me off.
So while I understand the need to feel blissfully naive, I can't help but think that that naivete comes at the price of my son's life. I know it's not logical and it's not fair. But dammit, it's not fair that I had to bury my son because nobody told me what to look for.
And honestly...if someone had told you all the information during a previous "normal" pregnancy (and you didn't face any the problems you did)...don't you think you would still maintain some real level of naivete? I mean...you were told about Downs, and gestational diabetes, and all that without falling to pieces. I would venture to guess that your lack of naivete really stems from actually losing Hans, rather than talking about the possibility of losing him. But I could be wrong.
Jill ~ Two things that immediately sprung to my mind reading this post is that 20000 people in any segment of society is a massive number. It is ludicrous that so many deaths can be ignored and I feel certain that the deaths of 20000 women, or African Americans, or Jewish men (etc..) would be met with panic and massive financial and academic resources.
Absolutely! For some reason, this particular segment of the population is just supposed to suck it up and accept that this is an "acceptable risk." I don't understand it. And I don't understand the thought process that says we're too emotionally weak to handle the realities...the information.
mopsy ~ I totally agree. The "Joy" of pregnancy is a luxury, not a right. It wasn't until the latter half of the twentieth century when women became deluded into thinking pregnancy = guaranteed living Gerber baby.
You know, I hadn't even thought of that. I'm going to have to do more research. I wonder when it was we changed our approach and became so completely full of sunshine about pregnancy? When did we lose the natural fear and why? It really hasn't been that long, so it shouldn't be too hard to pinpoint. I wonder if it isn't directly related to doctors and medical professionals repeatedly telling us "not to worry." It's like we went from a realistic look at pregnancy and its risks to some sort of mass delusion that we had NO worries at all. Bizarre.
To everyone who can't see my blog in it's holiday format, what web browser are you using? (**never mind...just let me know if you can see it now**)
Now that I've beaten the horse to death...I need to come up with something original to blog about. hmmm...
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I read a book about the effects of moving women's medical issues out of the hands of family and into the licensed medical professions. Very interesting.
Now if only my addled brain could recollect the name of the book....
You know, I've read your series of entries on all of this stuff and haven't really felt like I knew how to respond so I didn't.
I get the feeling that you, Catherine, feel the same way i do about life in general. What I mean by that is this; information = control.
I have never done well in situations that required me to deal with them blind. I have to have the information in order to function.
I could never be one of those people who didn't do the AFP or an amnio. Not because I would choose to not have the baby. I would. It's because I have to feel prepared. I have to feel armed with the information I need to deal with a situation before I can feel comfortable getting into it. If my baby was going to have a problem, I would want to know.
If we had known about my mutated (MTHFR) clotting gene, we could have saved Audrey. Am I pissed that it's a simple blood test and they wait for a baby to die before they test. You are God damn right I am. Everyday of my life.
I know not everyone has the luxury of knowing what happened to their baby, why they died. Before we knew, my worst fear was that we would never find out. I think God must have known that I couldn't have lived with not knowing what happened so He made sure we figured it out.
I know there are people who don't want to know. Who would rather deal with circumstances as they present themselves. I can respect that. I know there are people out there who function better that way.
Call me a control freak, but I cannot. I won't fall apart. I won't melt into a puddle if I get bad news. Just for Christ's sakes, tell me what's going on. I hate surprises.
Hi Catherine,
Thanks for posting your SP7 questionnaire! I hope you enjoy spoiling your pal, and being spoiled!
Shelby
You didn't sound defensive; I just didn't word my thoughts well. I hear you about the med mal. Just thinking about what the lawyer we talked to said brings tears to my eyes. I handed him the case on a platter, complete with other doctors comments, but no one would testify for us.
But you will make such a difference, Catherine. You're so brave to pursue it. I'm so proud of you.
catherine, i didn't find your remarks insensitive, they just didn't apply to how i felt, that's all. and for what it's worth, my naivete was gone long before hans's birth. i have always been an information-hound, and i worried for years about being able to get pregnant, then about bleeding in the first trimester, then about the two scary results on the triple screen (one way too high, the second way too low), which led to the amnio (which i otherwise hadn't planned to have, because i was all too aware of the abortion risks associated with having it done) and genetic counseling to prepare to abort if hans was not viable. the amnio showed the triple screen results were false-positives, but during the amnio they found the two-vessel cord and the kidney problems that would haunt us for the rest of the pregnancy. i had all the information in the world, and had already had to consider the end of my child's life, but i still didn't *understand* that hans could make it to the end and then die. i knew it, but i didn't understand it. i had all the information, and all the worry, and all the preventative care, and my son still died. it did me no good. so personally, i'd prefer to just be ignorant, since in my case the outcome would have been the same. i've always believed information = power, so imagine my surprise when for once it didn't.
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