Thursday, May 15, 2008

Fault with a side of stupidity

No matter what anyone says, I will always blame myself for M's death. I know I have not told much of his story here, and I do want to. I would actually like to tell it in a coherent way from the start to the end, but I never seem to sit down and do it. My urge to write things always comes in pieces. Today, the story takes place in the very beginning and the very end.

In the months before I became pregnant with M, I started feeling some joint pain. It was very mild at first, and mostly in my hands. It started to get slightly worse, and I ended up feeling pain in my feet as well. It took me a long, long time to finally go to the doctor because not only am I not a go to the doctor kind of person, but the discomfort was so sporadic. Here one day bad, next day mild, next day the pain wasn't there at all.

When I finally went to the doctor, he asked me a bunch of questions, including if I had ever been pregnant. He really didn't tell me anything, and sent me away with a pamphlet on arthritis and instructions to come back in a few months. I never went. Mostly because the pain started to feel better. But, honestly, also because time just got away from me and it wasn't like he seemed that helpful or informative anyway.

I found out I was pregnant. My world became consumed with that. I honestly don't remember if I mentioned to the ob/gyn that I saw someone for joint pain. I don't think I did. I think I assumed it was in my records.

Fast forward to the days before M died. He was too quiet. Much, much too quiet. I have a very vivid memory that I have never shared with anyone before. I was sitting on the couch, watching TV. It dawned on me that he wasn't moving. I poked my belly, and mr. g teased me, saying, leave him alone, he is sleeping. And I convinced myself that he probably was.

Another memory, we are eating dinner with mr. g's coworkers. I had my hand on my belly and one of them asked if he was moving around. I smiled, but then realized, no, he wasn't. I did nothing.

Let us tear apart my guilt here. I found out after M died, that I do indeed have some autoimmune condition and that was what was causing my joint pain. It isn't lupus, it isn't arthritis. They don't know what it is, I just have some weird antibodies. Of course, some autoimmune conditions are associated with pregnancy loss. Mostly miscarriage, but still. I have also had more than one doctor reassure me that they really don't think M's death was related because I don't have the conditions that are associated specifically with loss. Of course, I have read hundreds of things about autoimmune conditions now, and one thing I know for sure, it that the medical community doesn't know a lot about it. It is still very much a mystery to them.

Now I don't really believe it was my disease. But I don't know for sure. And I really dropped the ball on that one. The part that really eats me up inside, is that that isn't like me at all. I normally would go research stuff if I was having discomfort like that. Why didn't I? Why did I just go along willy nilly like? Why didn't I at least mention to the ob/gyn that I had visited a rheumatologist and that I was supposed to go back? Like I said, I am not sure it was actually my disease that killed him, but if I had gone back, if I had told someone, I probably would have been watched closer. Because having some weird antibodies gets you watched closer in pregnancy. I didn't know I had weird antibodies, because I didn't go back to the doctor. And maybe if they did decide to watch me closer, something would have been seen. Something maybe would have been caught, that made them go, "hey, this baby was doing so well, and now his heartbeat is slower". Or then again, maybe not.

Lets move on. Why didn't I go to the doctor when M was quiet? Why? Why? Why? How stupid could I have been? I feel the need to share that I am NOT an ignorant person. I try to keep up on things, read a lot, all that stuff. So how could I have not known that his stillness WAS NOT NORMAL? But I didn't. Every time I noted it, I convinced myself he was just quiet at that moment. Why didn't I check again later? WHY? I don't know. I don't know. I feel so dumb. Especially now that I have had baby girl A. Yes, babies move, ALL THE TIME, mostly. They don't just stop.

It just doesn't seem like me. The time I drop the ball is the ONE time it mattered so much. I don't know if I am being totally honest though. I say it doesn't seem like me to not go to the doctor, to not realize his stillness was wrong, but truthfully, that isn't me NOW. I was so naive back then. Maybe that was exactly me. I feel like I was so dumb and ignorant. Ignorant as a woman who smokes or drinks while pg., because she *doesn't know any better*.

I realize that even if I had done all things differently, it doesn't mean the outcome would have been different. The cord was around his neck, and according to his autopsy, he showed signs of asphyxiation. I tell myself that could have been it, and if so, then it took seconds, and no one would have caught it or been able to do anything about it. But sometimes I think I only tell myself that so I can continue to live with myself.

The guilt is crushing at times. And one of the worst outcomes of it, is that I have felt scared with baby girl A. What if she gets sick and I don't take her to the doctor soon enough? What if she has a cut, that I chalk up as nothing and it isn't nothing? And on, and on, and on.

I have told myself all of the comforting things. It wasn't your fault, if you had known, you would have done anything to save M, etc . etc. But in the end, I have to live with the guilt. It won't ever completely go away.

**********************

I have to add, as I was re-reading this, I almost decided not to publish it. That is how ashamed I am of myself. I feel like I let my son down in huge ways. I did decide to go ahead though, because I know guilt is a shared thing in our community. And also because I need to get some of this stuff off my chest. I need to keep grieving and dealing with this. Two years later, I am just starting to realize I have barely scratched the surface. I'm pretty sure most of my grieving will be done here and in my head, because as we all know, most of the people around me think I am *better*. I hate myself right now.

20 comments:

Coggy said...

I too am a well educated intelligent woman who with hindsight would have realized that the slowing down of movement at the end was an issue. I (and I mean we) had never been pregnant before how could we have known what is normal and what is not. I put it down to him running our of room or sleeping or any number of things. Why? Because you DO NOT expect your baby to up and die on you. We can not apply the knowledge we have now with what we knew then. You can try to but you will end up beating yourself up over it forever.

Its highly likely that if you'd told your OB about the arthritis he would have just reassured you that it wasn't an issue. Its unlikely he would have tested for other antibodies. That is just my speculation but I really don't think it would have made a difference.

None of this was our fault we did everything we could at the time and we couldn't prevent this happening. Its natural to look to blame ourselves, I have been over endless things in my head of how it could have been my fault. I think its important that you wrote this and posted it because I hope you will see all of us here do this to ourselves. It really isnt your fault.

As for baby A, unless someone put her in a windowless room and asked you to make sure she was OK by my monitoring her without being able to see or hear her I can't imagine you'd miss a thing about her health. When you think about it that's kind of what we were having to do with our babies in utero.

Sorry long comment I just want you to know I often feel the same. K x x

Beruriah said...

Oh, Ms. G. Coggy's right. I am so sorry you have to live with these regrets. I have my own, and I wish I knew how to get rid of them. Because ultimately, it would have been strange for us to think things could go so horribly wrong. I'm sure you're a very careful mom when it comes to A. But that fear, I get it too. Samuel has taken a few extraneous trips to the doctor. Oh well. It's worth coming across as a bit of a crazy. Not that the ped ever seems to think that (yet).

niobe said...

I wish there was something I could do to erase your guilt. Because, as others have said and you've told yourself, you didn't do anything wrong. But I know that there are some feelings that no amount of reasoning will take away.

Tash said...

I also felt Maddy wasn't moving much, but you know, she always made her kick counts. I told the OB. Nothing was ever deemed wrong. And I had previous experience -- I know EXACTLY what it felt like to have a healthy baby in there, and yet I didn't do much about it either.

In my case, it wouldn't have made a damn bit of difference. She was sick. There was no time that we could've done things earlier, nothing we could've fixed, the end result would've been the same but with a different timeline.

You did nothing wrong. Like Niobe, I wish I could erase this for you. It's one thing I don't have much of (I've gotta lot of other stuff though!) and I'm always so saddened to think you've got this on top of your loss.

froggy mommy said...

I wonder everyday if Gregory would be here if I'd said something or done something differently. The guilt just eats me up at times. My head knows it wasn't my fault, but my heart just won't agree.

CLC said...

The guilt is what kills me. I feel like I could have written this Ms. G, except that it was much better written than I could ever do! It's easy for me to jump on the bandwagon and say it's not your fault, but then when it comes to myself, I don't believe it. So I know you won't believe it either. I wish I could change both of our minds. I hope that acceptance comes at some point and that the guilt subsides. Take care and try not to be too hard on yourself.

Monica H said...

Don't hate yourself. It wasn't and isn't your fault. You did believe that he was okay and he was just sleeping. No mom wants to think that their baby is dead. Don't be so hard on yourself (easier said than done0 I know).

But thank you for posting this because I think we can all support eachother.

Julia said...

Oh, how I hate the guilt. I hate it because this thing is so freaking hard as is, and the guilt on top of it? Must just be crippling.
You didn't know, and you couldn't have known. If it was the cord thing, it happened fast and there was nothing you could've done. No, really. There just isn't time. And the antibodies? If they don't know what they are doing, they can't know what to expect or what to do. It turns out we know a lot these days, but still very very little.

I wish any of this could take away the guilt, to even lessen it a little... I am sorry.

Rosepetal said...

Everything you've written about your feelings on M's death applies to me too. So I won't tell you not to blame yourself as I know that it's pointless.

I also have at least two autoimmune conditions (Hashimoto's thyroiditis and vitiligo). No-one has ever said they were linked to my son's death, but then no-one has ever put forward any reason for his death either.

Catherine said...

Someone once asked me...Would you blame a cancer patient for getting cancer? And the truth is that I might have...before. I would have asked a zillion questions about their health history, their habits, their lifestyle...and try to find something to "blame." Over the last three years I have learned that sometimes shit happens and there just is no blame. Just because you were pregnant does not mean you were granted some omniscient power. You weren't ignorant or any of those other things you're thinking of yourself. If anything, you were a victim of a society that doesn't talk about these things. A society that has decided it's better not to "scare" women during pregnancy by providing them valuable information. I BET you NEVER had one single talk with your doctor about the possibility of stillbirth. Most women don't. Not through their own fault, but through the fault of their doctors. If you must blame someone, I think I would look there first. But this is turning into a rant and I don't want it to be. Just know that you're not alone and nobody blames you but you. Only you can decide when to let go of that. {{{hugs}}}

crazy beautiful mom! said...

There is nothing anyone can really say that can make you not feel this way. I know all too well, my daughter was born premature at 22 weeks when everything was seeming to go well with her. It's a long story but if you read my last post I went through a lot of medical stuff and was told it was not affecting my baby. My biggest regret is listening to everyone who told me it was going to be fine. Deep in my heart I too am ashamed because I feel I didn't protect her the way a mother should. It's horrible and I too have never blogged about it. I pray you have strength.

crazy beautiful mom! said...

There is nothing anyone can really say that can make you not feel this way. I know all too well, my daughter was born premature at 22 weeks when everything was seeming to go well with her. It's a long story but if you read my last post I went through a lot of medical stuff and was told it was not affecting my baby. My biggest regret is listening to everyone who told me it was going to be fine. Deep in my heart I too am ashamed because I feel I didn't protect her the way a mother should. It's horrible and I too have never blogged about it. I pray you have strength.

Devani said...

Wow did this resonate with me.

I've thought an awful lot about guilt in the seven years since my first son was stillborn...asked a lot of "WHY" questions (why did it take me two days to realize something was wrong?!?) and said a lot of "IF ONLY"s (if only I'd made myself more clear about his decreased movement at my last OB visit, the day before I believe he died). I've come to a couple of conclusions about it, or at least to a few things I feel hold truth for me...

First, babylost mamas WILL feel guilt. *I* will feel guilt, sometimes lots, sometimes just a twinge, for the rest of my life, and that's okay. It isn't pathological (like one therapist tried to tell me!), it isn't any kind of weakness or lack of intellectual understanding on my part. It just...IS. Normal. Natural. Sucky as hell, but there.

Second, when I look at my guilt...sit with it...meditate on it...I find that, for me, it is a cover for a much more frightening feeling - helplessness. It is far safer for me to feel like there was something that I *could* have done than to think that I am so powerless that I could not control something so intimate as growing a child inside my body. Acknowledging that I am that helpless against the whims of the universe terrifies me. Far better to believe that I was in charge, even if it rips my heart out.

I remember the first couple of years after Griffin's death, my guilt would literally eat my days - I feared it like a monster that would consume my soul. When I stopped fighting it and let myself really "be" in it, it became much less powerful. Now, it can be just as big, but it scares me less. When it rears up inside of me, I am able to acknowledge it (hello darkness my old friend), make a place for it inside of me, and just allow it to...be...with me for as long at it wants to. I feel more peaceful about it...less guilty about *feeling* guilty (LOL) and don't cling to it so desperately.

Blessings to you, ms. G. Be gentle with yourself. You deserve it.

Jaime said...

I am in the same boat.
My guilt is that somewhere in my heart I knew I should just let them induce me when I hit 41 weeks. He was alive and well and I was in dire sciatic pain and deeply depressed from the pain and discomfort. I turned down induction as I wanted a natural home birth more then anything. His autopsy revealed he was fine, healthy even, it was my placenta that stopped feeding him. I was past 42 weeks and my placenta was breaking down as they can do, and no one could have caught that except in an ultrasound, which I didn't have because I was nearly 42 weeks, and I knew if I went to the hospital for an ultrasound, they would pressure me to stay and induce. Now I know he would have lived if I had let them induce me at 41 weeks, he was fine at that point.
the guilt is really horrible at times, but I can't even talk about it cause my husband get's so mad, he wont let me blame myself.

CLC said...

I nominated you for a Pink Rose award. Thanks for all of your support! See my blog for details.

Carole said...

Sending you a huge amount of hugs. I know myself that I was a completely different person pre-loss. I just didn't get it. Our society seems to say...get pregnant...bring home a baby. I am wishing you peace in the days ahead.
~Carole

His Mom said...

I will always blame myself for Curtis' death. I know I didn't do it on purpose, but I know I could have prevented it if I would have insisted more with my doctor when things felt off and if I would have listened to my gut feelings telling me things were really wrong.

I don't care how many support groups and therapy I can go to, I know the truth.

kp said...

It's been almost three years since my daughter was stillborn and I still get a knot in my stomach when I think about the moment I could have saved her. We were touring the maternity ward, two days before my scheduled c-section, and I felt a long, sharp pain. It finally went away and I just blew it off. The next day, I found out she was dead. I feel like if I'd just said something to the nurse conducting the tour, she'd be here with me now.

JGirl2005 said...

I think we all feel like there was something we could have done. The guilt is so great, but this was not your fault.

kate said...

I could have written your post because i had a few of the same moments (except the autoimmune stuff). We lost our son at 34 weeks, too. The guilt has dissipated a bit over the years (it is 5 years for me now). I totally agree with coggy & also catherine -- the doctors should be more forthcoming with us. I considered myself 'informed' but i didn't even know to do kick counts. DUH.