The needle and the damage done

The wall to the left of the flat, narrow bed was largely clad in boxes labelled kits, that strangely jaunty name for what I assumed were needles, perhaps syringes and whatever sterile, sealed storage their preservation and transport demanded.

The needle whose future work had preoccupied our thinking for the previous four weeks was out of its own kit now, its action calmly described by the consultant who sat near the foot of the bed. Neither the señor nor I saw it, my eyes closing as I saw the señor drop his head toward the floor, knees and feet splayed and hands clasped in the sad stock pose of the waiting man.

The incursion of the needle was less painful than a blood test or an injection: with almost no sensation through the skin and then with resistance through the uterine wall, which contracted, as predicted, dully and at its distant perimeter.

Baby’s fine, said the consultant, and far away from the needle. Not paying any attention at all. All done for now.

All done: that moment’s marker that refers only to the passing of that incident, the completing of that process, in this case the step toward another degree of certainty at which, we were assured, we – I – would feel better, or at least less wretched. The process to this point had been a mélange of measurements and statistical probabilities, calculated from a wider range of sources than when I was pregnant with my first daughter two years earlier. Some were tangible and some painfully speculative. All pointed toward what felt, every day, like a door about to close behind me.

I had mantras, straws at which to clutch, that worked for some of the time. In moments of lucidity I could laugh at their disparate origins. A partly-remembered maxim from a former counsellor: that the ability to cope with uncertainty is a sign of mental health. Viv Richards, murmuring to the interviewer in Fire on Babylon that “I always backed myself”. Back yourself to raise this baby, I murmured in turn, not actually saying a word but imagining myself speaking through gritted teeth. The universal message of my colleagues, that they thought us best equipped among parents to take care of a child with the disability the numbers offered us. People wouldn’t consistently say that just to be nice, I reasoned, even in a workplace culture that prizes niceness above many other things.

I read multiple scholarly and newspaper articles to try better to understand just what our numbers were saying, grimly mindful too of the phrase “our numbers” and its usual location in fortune, lottery, fate. I did so much reading and research that I was instructed by more than one social service not to do any more.

Of the fetuses whose nuchal fold – an area at the back of the neck – was measured at the end of the first trimester, just five percent of those called normal would have a measurement greater than 2.5 millimetres. Of the fetuses who would be born with Down Syndrome or other conditions caused by chromosomal variations (I found the standard phrase “abnormality” almost intolerable to say), almost all would have a nuchal fold measurement greater than 2.5 millimetres. Our fetus had a measurement of 3.6 millimetres. Measuring alone could not indicate to which of the two groups a fetus with a larger measurement belonged. The odds could be further refined by including blood test results, maternal age and maternal weight in the calculation. This done, we had learned at the beginning of the thirteenth week of pregnancy that the particular set of odds given our fetus were one in five of having Trisomy 21, which causes Down Syndrome. The odds for the other trisomic conditions, rarer and more disabling, were also increased, but none to that extent.

It was strange to have a private drama take over our daytime thoughts in a year where all dramas and the source of collective hardship had been public, civic and seismological, and the reminder to self to think of the unhappiness of the eastern suburbs, to put my own uncertainty into some wider and more worthy context, was another of my daily maxims. These stuck as inconsistently as a fridge magnet thrown at a metal door from a distance. (It was further undermined when a colleague from the eastern suburbs told me she was using my worries to keep her own earthquake-related problems in perspective.)

I write of fears and worries, but these were specific. I was worried about our ability to take care of a child with disabilities, when the nature of those disabilities remained unknown, except under the wide umbrella of a syndrome: developmental delays and cognitive limitations reduced in significance by the fact of a first-year mortality rate of fifteen percent for affected children; the fear of prejudice, the fear of domestic chaos. I was also, far more pressingly, worried about my ability to know my own mind, my own wishes, in a system which included the facilitation of swift, early termination of such a fetus. My anguish was widely read as good grounds for abortion, should our particular trisomy be confirmed. I did not want this, but nor did I want the anguish.

The fact that we were a minority in this projected path – my reading suggested that anywhere between seventy and eighty percent of fetuses confirmed with Trisomy 21 are aborted – made trusting that I wanted to choose this path even more distressing. It put me in conflict with the señor, into whose moral philosophy relativism has made considerably fewer insinuations than mine. That first emotional plumb, the sounding at the first scan that we wanted our baby regardless, sustained him in a way it did not me. What if I were wrong about our abilities, our commitment? Neatly and swiftly, my fear that this would tear us apart did an accelerated job of doing just that, our lives over those four weeks converted by bitter irony and meta-narrative into a functioning version of what I feared would happen in future, and all, as the señor pointed out, for a paper tiger, a fetus whose nature remained unknown to us.

So I had amniocentesis, the narrative needle to extract the fluid in which chromosomes could be counted. After forty-eight hours and then again at two weeks those odds that more than one professional had described as “huge” were revealed to have gone our way, in that our fetus – female, who quickly became to us a girl, a daughter – had no trisomies, no syndrome, none of our fears. In the relief of this news persisted the fear of the increased risk of miscarriage that came with the procedure, the shadow of a shadow that we had also wondered how we might endure. Roulette, said the señor, Russian Roulette, but my mental health was not going to hold up with the alternative, without amniocentesis, of six months of waiting. Between us we found enough cultural capital – wedding vows, the memory of our respective maternal grandparents, so loyal to each other – to wear that fear.

What do we have now? We have our eighteen-week-old fetus, the daughter-to-be, longed-for no less for the month-long possibility of those trisomies, and her older sister, and each other. We have the possibility of fetal heart problems, another spectre of that larger nuchal measurement, at the coming anatomy scan. We have angry, radicalised, idealised sensibilities, the strong notion that society needs to change, that the solution to fetuses conceived with trisomies is not necessarily or logically that they not be born. The fact that this is the chosen path for so many parents of these fetuses speaks to me of a wider environment in which those commonplace concenrs of feminism and the history of labour are dominant.

The way in which the demands of work and family are positioned as fundamentally in competition, rather than in alignment with each other, the way in which the development of children is predicated, even before they are born, on their ability one day to join the industrialised workforce, the way in which the value of people is quantified to some degree by the amount of money their thriving will cost the state: all these things contribute to a normalising and privileging of certain kinds of human over others. Guidelines for those contemplating carrying or not carrying a fetus with a trisomy invite them to consider such questions as what the value of life is, as if these are matters best reflected on by strained, frightened parents in a window of just a few weeks. Why should moral philosophy be their work alone?

It pains me (and regular readers will imagine how much much) to impose upon the cool brisk tone I like to bring to my written work something approaching an impassioned plea, but these are moral questions for us all, and we have a social duty, I believe, to push beyond the post-industrial dictates of neo-liberalism, to find, as Robin Hyde argued in the 1930s, the way forward for a society in which mothers (and now fathers too) can work and have their children, including disabled children, including people for whom the social prescription seems at present restricted to demanding a lot of work but bringing a lot of love. I do not think the social value of my unborn daughter ought to be contingent on the fact she will not be born with the trisomy that causes Down Syndrome. I do not think our wish to bear and raise her even had this been true should be regarded as an aberrant choice. I do not think anyone is helped in this by narrow abortion laws that make a fetus with disabilities just one of a few reasons for which a pregnancy may not legally continue, although on this matter I doubt I have any stomach for engaging in internet debate.

It is easy when living and working the life of the mind, when running a household of little conflict and relative privilege not to think in any personal manner about the wider state systems that sustain and shape our moral choices, our assumptions about the value and viability of life; let this be someone else’s work, perhaps the working or non-working poor at whose feet neo-liberalism places responsibility for their own suffering. This experience has brought the señor and me into immediate, visceral contact with those questions, in a social context where it is assumed that success and privilege will largely consist in not having to think about them at all. It brings us to to that umbrella question that is the go-to for the left wing view: if like this for us, then how for others? On this and in this, as much as in the increasing fetal movement of my growing daughter-to-be, my thinking turns.

Tagged as: amniocentesis, antenatal screening, baby, fetus