Thursday, November 27, 2003

Birth of a Community

Birth of a Community
Bee Lavender

(This story is an excerpt from the zine “A Beautiful Final Tribute, Issue Seven: In Time of Emergency.”)

We lived in Portland when I decided to have another baby. It was a controversial choice because I had only just barely managed to skid into some kind of stability with my extraordinary illness. But I felt healthy, and ready, and I was still young enough that I was willing to take the risk. The HMO had suggested removing my ovaries to avoid the potential of another cancer. My fertility did not seem like an open ended option. The pregnancy did not force me out of remission. I remained healthy.

I consented to genetic screening that put my fetus under intense scrutiny to identify potential defects. We learned that we were going to have a boy, that his spine and brain were normal, that he was developing at the correct pace. We also learned that the placenta covered my cervix.

I hired a midwife and planned to do a homebirth, or if that wasn't possible, a lay-midwife assisted hospital birth. We were assured by the perinatologist, the gynecologist, and the midwife that the placenta would move up with the expanding uterus. It was statistically improbable that a placenta previa diagnosed so early would be a hazard; the vast majority noticed in the first trimester are corrected by the second trimester.

But my placenta did not choose to move, and the only available treatment (suggested not only by the midwife but also by the specialists) was to visualize change. I'm not opposed to this at a conceptual level; I've had many experiences where the only thing separating me from the precipice is my simple desire to live. So I sat around the house for weeks, imagining the placenta creeping upward.

At the start of the second trimester I started to bleed. There wasn't much to do except continue the mental exercise and stay in bed; even after the bleeding stopped the pregnancy started to feel more like a miscarriage than a viable baby. I was allowed to get up to make snacks and pick up my daughter at school and go to medical appointments, but other than those tasks, I was required to remain in bed and focus on only happy and positive thoughts. I was not supposed to worry, and specifically was not supposed to retain in my mind the fact that a stubborn placenta previa that had not moved so much as a millimeter was quite likely to be a placenta accreta, which in turn usually means a risk of death to the mother and baby. It also, without exception, requires a radical hysterectomy. I was twenty-five years old and didn't particularly want to lose my uterus. I figured I had already lost enough of my body through the years.

We hadn¹t lived in Portland very long, had not managed to find a social network. The few friends I had in the city fell away. There was no rousing of a community to offer solace and assistance. The midwife had been paid in full through barter but even she started to fade out.

At week 30 I was at a medical appointment when I started to bleed again. My daughter was at school in another county and there wasn't anyone to call. I didn't tell the doctor what was happening because I knew that I would not be allowed to leave, that the danger was severe.

I drove myself, bleeding, to the school and tried to convince one of the other parents to help me. She agreed in a desultory fashion to watch my child for the afternoon but made it clear that she would do no more. I gave my little girl a kiss and drove myself to a different county to check into a Catholic hospital.

It was a calculated risk - I knew that if I was able to keep the pregnancy I would be in the hospital for the duration. I also knew that the HMO would not be polite about sterilization. I suspected, and still believe, that they would have taken my uterus rather than risk the expense of additional pregnancies.

Catholic hospitals are not allowed to offer information about birth control unless it is solicited by the patient, and even then, employees may opt out of the discussion because of their faith. I gambled that my atheist soul would be safer with a crucifix over the bed as I languished.

Without consulting me, the doctors decided to hold a special session with experts from several fields, take a vote, and send someone off to the archdiocese with a report about my interesting history. The doctors sought and received special dispensation to sterilize me.

For my own good.

When I not only refused the procedure but started to talk about lawsuits the doctors quickly withdrew the offer. If I had been properly socialized I would have listened to the doctors; I would have consented to their plans. The fact that I did not is the legacy of my youthful rage.

For the next five weeks, I was on full hospital bedrest, restricted to lounging on my left side. My blood pressure dropped so low I could stay awake only for short periods; I was too tired to read and spent all of my waking time listening to the BBC news reports about the slaughter in East Timor. My husband, Byron, was in the first year of graduate school and had to go to classes and work and at the same time figure out how to take care our first-grader.

We had absolutely no support from anyone. Not a single friend came to our aid. Nobody other than Byron visited me in the hospital. The midwife decided I was likely going to die and went on vacation.

My daughter says she learned to read during this time; she remembers going up Highway 26 and seeing the signs pointing to the left for the zoo and the right for the hospital and asking if they could please go to the zoo. She played at the foot of the bed for hours as Byron studied and nurses dropped in with popsicles and comforting words.

The baby was high and breech and rarely moved, as though he understood the danger waiting for him. At week 35 my uterus started to contract. He flipped and his head engaged with the placenta. The blood streamed out of my body and the doctors rushed me into surgery. They cut me quickly, a line straight down from my belly button, cut me before the anesthetic took hold, and I could feel the incision and had to hold still as the scalpel ripped through layers of skin and muscle. I whispered "I can feel this" but the doctors ignored me until Byron yelled at them. I passed out after the shot, waking intermittently to flashes of pain and horror.

The baby was five weeks premature, with raspy lungs, a mewling, sighing sound. We refused to send him to the neo-natal intensive care unit for treatment; I put him inside my gown and held him tight and let my body be his incubator. My parents came from out of state to help and when they left, Byron's mother came from Colorado. But they all had jobs and could not stay very long.

It took an entire year to recover from the surgery (although I did not lose my uterus) and for the baby to catch up. The consequences of prematurity are both harsh and subtle, and as I paced the floors singing to my sensitive crying child I had hours and months to reflect on what went wrong.

I prefer not to tell sad stories unless they illustrate practical solutions to difficult problems.

I decided that the worst part of the experience was lack of community. I realized that community doesn't happen automatically, just because of proximity, or because of need. I started to understand that true community is cultivated, nurtured, tended, and above all, that it is a deliberate and revolutionary act to set aside grievances and work toward an idealistic goal.

For the next five years I acted with diligence to create the kind of community I wished had been available when my children were born. I created a massive online support network and started doing large public events in my city. I published essays about the politics of parenting, edited and published an online parenting zine, and started web sites for both teen parents and artistic parents. My purpose was to facilitate friendship and kinship and social change.

I had no funding, no training, and no reason to think that my idiosyncratic notions would be helpful to other people. I started with two injured hands and big ideas, then set out to create something new for the radical and disenfranchised parents of the world. The projects grew and grew with very little direction other than a commitment to certain idealistic beliefs. The work was never easy, and grew harder over the years, but even in the darkest moments of organizational development, I knew that I was doing the right thing. If even one woman could have a friend, someone to help her in a similar situation, someone to laugh with, then the work mattered. I adhered closely to the concept that serving vulnerable people is more important than any career or personal goal. I simply want other people to have access to hope.

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