June 2, 2005

...and then rather better...

We had some good news today. Kiera' amniotic fluid is way up, and there are no firm signs of infection, just an ambiguous protein in her blood that may have been caused by something else.

We're not out of the woods, but we really needed good news today. And we got some.


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June 6, 2005

And, now some modicum of relief...

It looks like Kiera and the baby will be okay. They might let her out on Friday, but today's ultrasound shows enough fluid for the baby's lungs to properly develop. I'm still spending almost all my time at the hospital, but it looks like it will all turn out. Thank you, everyone, for your thoughts, prayers and support.


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June 16, 2005

The power of men over events, rather than of events over men

I always thought the title was a quote from Marx, but for the moment, I can't seem to find it anywhere. It's always struck me as the most perfect definition of progress. I've seen other attempts to define that slippery notion - definitions involving material things like nutrition or per capita power consumption, others who end up creating subtly circular definitions by defining it in terms of quantities of utility or happiness, or something else every bit as slippery as "progress" if not more. But those definitions always struck me as inherently lacking the simplicity and power of defining "progress" as "the power of men over events, rather than of events over men"

It also points to the ambiguity and inadequacy of progress. Historical progress, events that virtually everyone agrees were progressive, have given men power over events that once had power over them. A bad harvest need no longer mean starvation. Diseases that once killed masses completely arbitrarily are now easily controlled and treated. But no primitive man, subject to the whims of the elements, ever found himself powerless in the face of an economic recession, or concerned about the outbreak of a rare disease on the other side of the world, or afraid of terrorists flying airplanes into buildings.

Progress is eternally incomplete and eternally insufficient. A progressive poltical project is, by its very nature, non-utopian. It is these things because progress always creates new events beyond the power of men.

But the dialectics of progress go still further. The power of men over events does not exclude the prospect that the very same events may have power over the very same men. At the same time as they are most potent, men can equally be just as powerless.

Wednesday, June 15th, 2005 was a lovely early summer day in Belgium. It was warm, and on this rare occasion dry, without a cloud in the sky. It was a good day to be born. And, as the Klingons say, it was a good day to die.

In the afternoon of the day before, we received the full chromosome test from Kiera's pregnancy. The baby had trisomy 18 - Edward's syndrome. It's a rare chromosomal defect, diagnosed in 1 out of 3000 pregnancies. It affects girls three times as often as boys. Half of all trisomy 18 pregnancies end in miscarriage if left alone. 5-10% of those born alive survive the first year. An insignificant number survive to a double digit age - perhaps a dozen, ever. They are severely handicapped at best. Most, mercifully, don't make it that long.

There was no decision. There was, theoretically, a decision. But there was no real decision. There was no real alternative.

Kiera was still in the hospital on bedrest, following the loss of fluid after her amniocentesis now almost 3 weeks ago. We had been expecting another ultrasound. The amniotic fluid level was still not rising as fast as it should have. Now, we know. We know that the amniotic membrane most likely was fragile because of the chromosomal defect. We know that it wasn't refilling very quickly because of the foetus' deformed kidneys. Now, we know.

Legal personhood in Belgium is specifically fixed in the law at 26 weeks. This does not mean that a pregnancy cannot be terminated after that stage, just that the paperwork is easier. At 17 weeks, we did not need to give a legal name, and there is no addition to the national mortality statistics. But the foetus was far enough along that D&C and more recent vaccuum methods of termination are not possible. I don't know if it's for legal reasons or psychological ones or for sound medical reasons, but here, in the 17th week, a pregnancy is terminated by inducing labour and letting the contractions ensure that the birth is still.

There was no point in waiting.

We were moved to a labour room. We were told that it would take time for the cervix to dialate, on average two days and possibly as long as four. Mercifully, it was only some 16 hours. They gave her painkillers and a sedative, then later an epidural. They told her that there was no reason she needed to feel any pain.

16 hours. 16 hours is a long time to wait for the end.

I was in the hospital almost the whole time. I even got a couple hours of sleep. In the morning we talked. The water broke, but they said that it would still take a long time. Kiera said she had decided that we needed to name her. We had the chromosome test, we knew it was a girl.

We had had some disputes over the name earlier, before... We had left them aside until we knew the gender of the baby. Now we needed a name, and Kiera had picked a first name. She wanted me to pick the middle name. I said I would think about it. Then, a friend we had called picked me up to take me home. I planned to stay only a few minutes to fetch some clothes and feed the cats. But, as soon as we were in the car, her middle name came to me. I called Kiera by cellphone and told her.

She said it happened just after that. As if my daughter had only been waiting for the last thing I could give her in life: a middle name. Then it was over. I wasn't even there.

She was Coralia June Martens, and she was supposed to be my little girl. But it wasn't meant to be.

I'm crying as I type this. It's the first time I've written her name down. I wrote that whole line in my head yesterday, and it's been crying to get out.

I had no power over this event. No one did. Trisomy 18 is very rare. There's no failure of prenatal care, no lifestyle choice that significantly alters the chances. We had no power to make this a healthy pregnancy. We only had the power to know, and the power to end it. And the knowlege that not knowing and not terminating would only have been worse is cold, cold comfort indeed. The dialectic of men and events is not a simple matter of one having power over the other, and no revoltution, no new technology, no amount of progress will ever change that.

I know... I know that at 17 weeks the nervous system is far less than fully formed. I know that my baby couldn't know how we loved her. I don't think she could even have known she was alive. But we knew she was alive, and we loved her as fully and intensely as any parent could love a child. And I know that I'm mourning not nearly so much that small doomed fetus as all those hopes and dreams we poured into her. I was going to teach her to eat with chopsticks, and how to do modular arithmetic with M&M's, and the joys of reading dictionaries... Not what every parent plans, I suppose, but what I planned.

I had planned so many more ways to show my love. But the only concrete act of love we could show our daughter was to end her short little life before she could realise that she had it. Before it filled up with pain.

Kiera is physically fine. That it went so quickly, that she's felt so few pains afterwards, is all a sign that physically there are no problems. She leaves the hospital tomorrow. Then we see what happens next.

I had planned to make this the very last post to Pedantry. My intent was to say that I can't do this anymore. To say good-bye to writing this blog, or seeing how little real writing there has been of late, saying good-bye to trying. But Kiera called during the last paragraph and convinced me to not quit. At least not yet. But I can't promise you much right now. Right now, I can't promise anything. Right now, I have a bottle of excellent cognac to crawl into.

There are people who think that what we did was murder. That God wanted us to have a terrible miscarriage, or a severely deformed and handicapped child. That somehow it was righter to let her suffer. Fuck them. They don't understand. They couldn't. What we did was the greatest demonstration of our love that we could offer our wanted, sought after, beloved daughter.

There isn't the slightest, the tiniest hesitation in my mind that we did the right thing. This wasn't trisomy 21. There were none of the ambiguities about the quality of life linked to Down's syndrome. This wasn't a case of mosaic trisomy 18, where the prognosis for a reasonably full life is much better. I talked to the geneticist. I checked out how they did the test, how many samples they took, how they double-checked their control samples and did it over with different equipment just to make sure. I heard them describe the birth deformities already visible in the foetus afterwards, the things they hadn't been able to see clearly in a standard ultrasound so early in pregnancy.

She had a double cleft palate and seriously deformed organs. But she also had my feet and Kiera's hands. What we did, we did out of love for our daughter.

Good-bye, Coralia June. Good-bye.


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