Sunday, June 8, 2008

Why I Am Leaning toward Cancelling My Amnio

I have a number of posts cooking in my brain, including one on locovore eating and my newish farmer's market obsession, fueled by listening to Barbara Kingsolver et al's Animal, Vegetable, Miracle on CD over and over again (neuroticism anyone? see below). Which is feeding into my farming fascination, leading me to put a photo I took of a peahen and peachick on my wallpaper. Also, I think, a post admitting that I am a complete and total geek and have started playing World of Warcraft with geeky Absurdist Lover. It's fun. I admit it. I haven't played an MMORPG (massively multiplayer online role playing game) since Everquest. And yes, I used to play D&D as a young person (advanced, not second edition, which should tell my fellow geeks how old I am). A wireless router, more memory for my ailing my laptop, and a WoW subscription were all the result of our having sold the trailer!!! YAY!!! So we're not quite so poor at the moment -- and I'm starting a new SAT intensive class in a week, so money will become more plentiful as free time grows scarce. (No, I haven't worked on the article. I have been fantastically tired and ill-feeling lately. Not good.)

But what I want to think through and articulate is why I'm now leaning away from going through with my scheduled amnio. Let me back up and tell this wee story. I don't think of having a baby as an illness in need of medical intervention. I also have historic problems with the medical industry on a couple of fronts. One is that western medicine tends to cut people up into parts, not paying enough attention to the interactions between systems. I have been diagnosed with IBS since I was ten (I prefer the term spastic colon, because it really does seem that my G-I tract is a spaz), but I could never get a doctor to agree that my symptoms are worse during my period. It was not until a nurse practioner at Planned Parenthood seemed to take me seriously that it all came together: during one's period, one gets uterine contractions which, she said, could very well affect one's digestive functioning. Not thinking through the interactions between bodily systems when one is pregnant seems a serious oversight to me -- because pregnancy is a full-body experience. Nothing feels the same in my body right now. Also, I'm suspicious of the cut-now, ask questions later approach of many in the medical profession. I don't at all deny that medical science does absolutely amazing things, but my experience is that medical science is just much better at acute rather than chronic or preventative care. If at all possible, I don't want a c-section or episiotomy. In fact, I would really like a care provider who treated me like a person who has some knowledge about my own body while addressing my concerns in an individualized and warm way. So, I want a midwife at a birth center, which seems like the most sensible compromise between my hippie longing for a home birth and the dreaded hospital.

But then there is lack of money and insurance. I finally got insurance in May. I'm due in October. This is not optimal. I looked around for birth centers and the rare midwives who deliver in hospitals covered by my insurance. Though they were listed on the website, which I'm told is the most reliable list, some birth centers are no longer birth centers, and the midwife groups don't exist anymore. In fact, I spent some very aggravating (which is to say weepy) afternoons calling numbers where no one answered. Finally, I got so desperate that I made an appointment at a place that used to be a birth center with a doctor(!), who is male (!). I've never had a male OB-GYN. I just don't really want to talk to anyone about my femaleness with anyone who understands what I'm saying clinically and as the result of study and observation, but cannot personally relate. But I was that desperate to know whether the baby was okay -- and so I just sort of went in there and did it.

Really, I've never felt so vulnerable and clueless in my life. My body, whose habits I've long been investigating and playing with, has grown foreign to me. (I crave cheese. My normal body can't deal with cheese. My normal body can't deal with the amount of dairy I now consume. Pregnant body deals with everything but overload. Weird.) I've had to talk myself down from the walls in order to not totally tense up when I think of birthing this baby. Reading a lot of birth stories in a wonderful midwifery book that totally articulates the kind of birth experience I'd really like for the baby and me to have really helps. Though I'm only five plus months, I'm wobbly on my feet and feel like I can't navigate my own body terribly well. Not to mention, I look down and don't recognize this huge belly that strangers probably still think is the natural outcome of an addiction to Ben & Jerry's. (Actually the Ben & Jerry's is also the baby's fault. And Absurdist Lover's too. He loves his ice cream. He is one of the few men who has a really well-developed sweet tooth. It's very bad. Very tasty. Very bad. But there's no danger that I'm not getting enough dairy.) I never really realized how in my body I really live until now when I pretty much feel like I'm trapped or at least swaddled in a body that doesn't feel like mine. Add all this to some serious mental fog, a normal part of pregnancy some call "mommy brain," and I'm not at all feeling strong and alert. It's been very tempting to just ride along the medical train with this doctor who seems to have it all figured out and in whom I can just turn over crucial decisions. And up until now I've basically been doing that, figuring that once I was sure the baby was okay, I'd go ahead and find myself a birth center and midwife who will deal with my insurance. (Frankly, the work of finding a midwife and all that and then dealing with the insurance stuff has just seemed like one more item on an impossible to-do list.)

But here's the thing: this is not the kind of mother I want to be, just relying on a medical profession I've never trusted to make decisions for me and my baby because I'm too tired to deal with it. This industry also hands out prescriptions for medicines that have not been tested for long enough and then has to issue black-box warnings (Depo-Provera, which I was on for years before anyone knew or mentioned that, oh, by the way, it reduces bone density, and you really shouldn't be on it for more than 18 months for your whole life), recalls, and other crap. So this doctor said that because I'm thirty-five, I should have an amnio (it being way too late for CVS, another genetic test). Thirty-five is the magic number when you're pregnant. This is when they start scaring you with Down's Syndrome and other problems. For a few weeks I was eager to get an amnio to "find out if the baby is okay," but I see now that this may be stupid. The likelihood of Down's Syndrome for a woman of thirty-five is 1 in 400 or .25%. But according to the Dr. Sears' website, the chance of harming the baby from the amnio itself is 1 in 100. Separately from that, there is also a slight chance of miscarriage after the amnio -- slight, but still above .25%. Now, I realize that for many people their need to know about Down's and other chromosomal defects would seriously outweigh their concerns about these teeny-weeny chances of problems from an amnio. But I'm 22 weeks. I've felt this baby kick -- a lot. Even if I found out something awful from an amnio, I couldn't abort this baby now. It's a baby to me. Not a collection of cells that would do better not to be alive and born. If I have a special needs baby, so be it. So the real question is: do I want to know now? Or do I want to wait and count fingers and toes like every other mother since the dawn of time? Even if they found nothing from the amnio, there still could be problems. There's just no way to know, no way to be 100% reassured. So can I just trust that this is the baby I'm supposed to have and let go of knowing? Or will it freak me out more to not know? This is the question I've been playing with every moment that I'm not distracted by something else. Absurdist Lover will support either decision. I'm scared both ways. I'm scared of the amnio, but I also don't want to be irresponsible (aka "overly hippie-dippy") to the baby. I also feel like I can barely justify my own fears of the amnio and leaning toward the do-nothing-and-let-nature-take-its-course school of thinking to some of my most confrontational family members. (I have to save my strength for the nearly inevitable -- because the doctor thinks the baby is a boy as a result of the ultrasound -- "yes, I'm a Jew, but there is no way I'm allowing a knife to come within two feet of my baby's penis" discussion.) One thing that has made me feel like maybe I'm not being totally hippie-dippy, but just smart in weighing all the evidence is that the Drs. and RN Sears still say, after William and Martha Sears had a Down's Syndrome baby: "we believe that it is unwarranted to scare a thirty-five-year-old mother into prenatal diagnostic tests (either amniocentesis or chorionic villi sampling)." So maybe I won't have that amnio, scheduled for Tuesday, after all. On Monday, that is, tomorrow, I see my doctor. And I have to get over that deer-in-the-headlights thing that happens every time I'm there if I'm going to tell him that I'm refusing an amnio because I have no intention of aborting this baby no matter what the outcome. I worry that if I do have an amnio, it's because I'm just too scared to hold onto my own convictions or too tired to fight. This is not the kind of mother I want to be, bowled over by other people's scare tactics and ideas of what I should do. I believe that now is the time to take a stand -- and to work to get the kind of care that I want so that this baby can be born into the best situation that I can imagine. Isn't being a good mother having the strength and guts to do what I think is right after I've weighed all the options and evidence, no matter how many people (family, doctors, etc.) urge me in other directions, no matter how tired I am, no matter how much I would just like to sort of sleep through the whole thing?

I realize in rereading this how much of this decision is really about me just feeling beaten down and impoverished and having to do things the way that others want me to. I just don't feel strong and centered enough to be able to confront doctors and family. Well, that has got to change. This baby needs a strong and centered mother. I may get overwhelmed and teary very easily and not be able to remember words, but am I really so mentally foggy that I can't rely on my own brain and heart? Maybe I just need to make more time for mental processing -- as in, maybe I'm should be writing and blogging more! Hmmmm.

Of course, feel free to weigh in. But don't be mean. I cry really easily now!


What Now? said...

Is Absurdist Lover going to these doctor visits with you? Could the two of you together find it more feasible to resist the authority of the medical establishment?

Congrats on selling the trailer; that must be such a relief!

Hilaire said...

What Now? asks a very good question...

But really, I think you are amazing for even contemplating this kind of resistance. I suspect that, after you have this scary conversation, you will feel very empowered.

Maude said...

i've heard many more stories than not about women who've been told that their babies will be born with down syndrome and it turns out the test was wrong. which i'm sure was a great relief when the child was born, but i can't even imagine the stress and pain it caused during all those months.

i'm getting to be friends with a woman who's a midwife and whose mother is an ob/gyn nurse. she had her baby at home, in her bathtub. if you want, i can get her e-mail and maybe you can pick her brain for advice. she loves! talking about this stuff so much that it's a real struggle for her not to approach every pregnant woman she meets because she wants to know everything about their pregnancy (but not in a creepy invasive way because she finds the medical profession's view of pregnancy creepy and invasive--that's not her goal--it's sheer joy for her). i'm sure she'd love it if you e-mailed her.

i miss you!

Dame Eleanor Hull said...

If you wouldn't abort no matter what, then there is no point in having the amnio.

Earnest English said...

WN and Hilaire: Actually Absurdist Lover does come with me, but the doctor seems to talk to one of us or the other, not us together as a unit or couple. (When the doctor talks to AL about me, with me in the third person, I feel even more alienated from the whole thing.) But AL and I are going to go in there today and be strong!

Maude, I would LOVE to talk to a midwife. LOVE IT!. Give her my email, my coordinates, have her beam me in. I'd really love to have that kind of voice in my life, even long distance. I think very soon AL and I have got to start looking into the alternative care available here, no matter how expensive. So we'll be on a payment plan -- what is so frightening about that???

DEH: Thanks for the support and welcome! I haven't seen you here before!

Anonymous said...

If you want to go through a more natural childbirth, keep fighting for it. Don't let the doctors and nurses pressure you into something you don't want. My mom is a nurse and worked for years for a family practice doctor who did home births (my three siblings were born at home). Now, she works in the birthing unit at a hospital and has to go along with the more "medical" way of doing things. However, whenever she does have a patient leaning toward doing things more naturally, she really sticks up for them. Keep looking and fighting for what you want. It may be a struggle to find, but it is out there.

medieval woman said...

Oh, EE - this is a timely discussion. I totally agree that you need to fight for the kind of birth YOU want - there are certain things that can't be planned for (i.e., potential emergencies at the moment) - that's why I'm pro-birthing center. They're usually very comfy and homey, but if something goes wrong, they can get the baby out quickly and help to save the mother.

But the whole magic number 35 thing I find horrifying. I can't imagine that our eggs ALL HAVE THE SAME EXPIRATION DATE! What if my egg is "old" at 34? What if someone else's is "old" at 40? I understand that the chances do go up as you get closer to 40 - if you were delivering at 39 (as my cousin just did with her first and only child) - then an amnio makes more sense. But 35? I think that as long as all other things look good that you shouldn't worry about it.

And what happens if you get pregnant when you're 34 and then deliver when you're 35? What if only half of your pregnancy occurs when you've crossed that ominous threshold?

Okay - now I'm channeling my own soon-to-be angst about getting preggers next year! I hope all goes well - I think you're making the right decision - stick to your guns!

Anonymous said...

Heya Absurdist-
Can you switch from a doctor to a midwife practice? It's a whole other level of care. My midwife changed my life. 2 home births, normal, no testing, no ultrasounds, no drugs at all. Even a midwife in a hospital setting is preferable to an OB. It's not 'resistance" it's trusting the process of life.

As far as not wanting the tests, "No." is a complete sentence.

If you won't abort then the only reason to do amnio is if you would like to have time to mentally & financially prepare for a handicapped child...