Sunday, May 30, 2010

Sometimes curiosity really did kill the cat

I just did something stupid, that I knew was stupid, out of morbid curiosity.

After we were told that something was really wrong with Aiden, we were referred to the MFM specialist here. He works for the catholic hospital, but he was supposed to be the best. Our OB had already indicated that Aiden's problems were incompatible with life. She assumed he had trisomy 13 or 18. She told us that even though the hospital was catholic, they would allow an early induction (before viability) if the ethics board agreed that the baby had no chance for survival.

We knew before going to the specialist that there was no real hope that Aiden could survive. We knew if he made it full term he had numerous surgeries in his future with no hope of life without constant care. It broke our hearts, but we thought it would be better to spare him pain. All we really wanted to know from the specialist was what exactly had gone wrong and if the ethics board would okay an induction.

The specialist was a horribly insensitive ass. He wouldn't answer any of our questions. He was obviously pro-life (anti-choice). When we asked him if the ethics board would consider Aiden's problems lethal he looked horrified and told us the they would not look at his case. He wouldn't even offer to try. We didn't have the answers at that point but trisomy 13 or 18 were still the most likely. When we asked what to do now, he said "just wait." He didn't elaborate on that, didn't say Aiden wouldn't make it full term, didn't say what we would do if he did. He gave me the blog address of one of his patients that had a boy with trisomy 13. When we asked what had happened to him, the doctor only said that his parents celebrated his life. I never went to that blog until today. I really wish I hadn't. I stumbled across the paper while cleaning and checked out their story. Now I am so angry.

I'm angry at how the doctor treated us. He didn't care that we wanted the best for our baby, just that our wishes didn't mesh with his values. I'm irrationally angry at those parents. They KNEW their baby would die soon after birth. They KNEW no one would force them to permit multiple surgeries. They KNEW that their son wouldn't suffer after being born. He died of heart failure, which I know is not a very painful way to go.

But Aiden would have suffered. He was already paralyzed in the womb. His poor little brain was being squeezed into his spinal cord. He probably couldn't swallow, or breath on his own. He would have suffocated, or he would have been born well enough to go through surgery for the spina bifida, cleft lip and palate, and heart defects. Only to be a paralyzed vegetable for the rest of his life. Those other parents got forty peaceful minutes with their baby. I got a day old dead fetus who's skin was starting to slough off. I hate them. I don't even know them and I hate them. I would have given anything for what they had and that asshole doctor denied me that chance because he thinks everyone should conform to his beliefs.

If anyone, ever again, tells me that "choosing life" is the only moral thing to do, I think I will be in jail shortly thereafter. I lost my baby. Isn't it enough? Do I have to be vilified by people that don't know me or my story? Every day I have to drive by the baptist church we live behind. They have a field of crosses and a huge sign that says "Everyday in the US X number of babies die BY CHOICE"

Yeah, well fuck you. Sometimes there is no choice.

7 comments:

  1. That final sentence says it all really.

    I wish people wouldn't make such terrible judgements when they simply aren't in possession of all the facts. As for that doctor? I really don't know what to say, I can't imagine what he is doing in a profession that is supposed to care. I'm terribly sorry.

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  2. Jen, As you know I am struggling with these issues myself. I have said before that I feel grateful that I was never criticized or questioned for the (non) choice I made. I had the opposite experience, the MFM docotors were certainly in support of termination even though they never came right out and said it, I knew that is what was implied. I wish I could ship you up here to liberal NYC, where those signs don't exist (or if they do you barely notice them). I did see a girl on the street the other day wearing a tee shirt that said "chose life", I wanted to scream at her and tell her that she has no right to tell me what to do.
    Read the comments on my post about my guilt for the termination. There are all these pro-life women who commented about how they understood this choice, supported it, and did not judge me.
    Sending love your way

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  3. I like your last sentence the most. It's so unfortunate with all that you had and are going through, that you have to deal with people like that.

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  4. I'm so sorry you had that experience. I was also at a Catholic hospital but had none of that - when we were potentially facing that heartbreaking decision, they didn't try and sway us one way or the other, gave us all the information, performed the amnio, and would have done everything except the actual procedure (they would have organised the referral though). I'm in Australia so I'm not sure if that's the difference.

    They do include the termination of pregnancies with incompatible with life defects in the 'termination by choice' statistics though here as well which makes me mad.

    Maddie x

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  5. do they really think that you WANTED aiden to die?

    i don't understand how these people think. how could they want a baby to suffer? it makes me want to cry to even think.

    i'm not surprised you're angry. it's not fair. but you absolutely did what was right. i don't think it's right, though, that your medical expert was such a judgemental freak.

    hugs hon. xx

    i don't know if it will make you feel any better cgd, but apparently some of those t-shirts, at least, are a) 80s throwback things that the wearers probably don't think for a second could refer to abortion, or b) (and more positively) they are a message of choosing life over war and extinction and such things - and the sellers claim to be pro-choice. see http://www.katharinehamnett.com/Campaigns/Choose-Life-T-Shirt//.

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  6. I couldn't agree with your last sentence more. And for someone who had no clue and watched her child disintegrate over a week, I couldn't agree with you more. It's awful. I decided if anyone told me this would be the outcome again I would end things as quickly and peacefully as possible *for the baby.* I wouldn't want to exist like that for a week and there was no way as a mother I could allow my child to exist like that either.

    I'm sorry you had to deal with this guy. In such a horrible circumstance there shouldn't be guilt, only grief and sympathy. I wish more people understood this. Thinking of you all.

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  7. As someone who had to make the choice to end her baby's suffering, I completely agree with you.

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