top of page

Unfathomable Life:
Pregnancy & Risk in an Age of Prediction

Immaculate-Heart-of-Mary-Novena-Prayers.webp

“You shouldn’t think too much about it.” My gynaecologist had always struck me as an under-thinker, but this time I agreed with him. I had overanalysed the question of whether to have a child, and the process had not led to any resolve, only to a knot of fear and uncertainty. Yet when I stepped back everything was quite simple: I loved someone, I wanted his child, I wanted our family.

 

At the time I was thirty-two. I assumed that once I stopped contraception I would conceive, almost by accident. I would follow my gynaecologist’s advice and scarcely think about it, and soon I would become a mother. I imagined myself as a pregnant woman, and then as a parent, who recognised how little any of it was in my control; who did not fall for god-complex delusions about how every flap of my wing would reverberate through the life of my child, indefinitely.

 

As it turned out, a very different future lay ahead of me, and with it, a very different self. To “fall” pregnant, as the expression goes: how lovely and passive; merely yielding, surrendering, to a pervasive force. But for some reason, I would not fall.

Stepping into my fertility doctor’s room, some two years later, felt not unlike stepping onto a treadmill that forever picked up speed and would never let me off. The doctor paged enthusiastically through booklets explaining tier upon tier of treatment options: ovulation inductions and inseminations and regimens of hormonal injections; tubal and uterine surgeries; in vitro fertilisations; genetic tests and analyses; donor eggs and donor sperm and surrogacy.

 

I had entered a place of branching choices and alternatives, of fierce debate and moral judgment and conflicting information, of endless recalculations of risks and benefits. My cherished notions of surrender and acceptance – with their convenient implications of innocence –  gave way to a state of constant alertness, deliberation, anxiety, and research.

 

*
 

Risk has a complicated relationship to knowledge. In one respect, risk concerns precisely what we do not know: its fundamental nature is uncertainty. But risk also implies insight: a recognition of what might transpire, even a glimpse of how likely it is. In an important sense, a guaranteed outcome is not “risked,” nor is an outcome that is utterly unforeseen.

All pregnant people make choices that impact the prenatal environment – anxiously navigating an ever-expanding array of partly understood dangers. Experts now advise a “precautionary principle,” which favours avoidance under most circumstances. The insidious infiltration of plastics and phthalates and pesticides, the chemical burden of your body, is shifted onto you to control. Every move you make is potentially increasing the risk of your child’s future cancer or infertility or IQ loss or ADHD; every move is potentially defining the life that is possible for them.

This anxiety can take on additional dimensions for those in fertility treatments. Not only because there is all the more information, but also because there is all the more choice. Choice presents itself as a benediction, and it often is. But choice invariably confers a burden: the possibility of the “wrong choice,” and with it a game of self-recrimination and blame that can go on indefinitely, depending on how devastating the consequences of the imagined “wrong choice” turn out to be.

To inform these constant decisions, you are obliged to consult “the information.” Articles and websites, sure, but for the more ambitious among us, studies upon studies comparing the outcome of different treatment approaches. You are afraid of so many things at once – of nothing working at all, of miscarriage, of harm to the embryos, of pregnancy complications, of birth defects and genetic syndromes, of the menacing unknowns hanging around new, invasive technologies – and each option seems to alleviate one fear only by making another weigh more heavily.

In addition to the choices which determine the prenatal environment, people who undertake IVF also have a series of decisions to make regarding the nature of fertilisation and, if a number of embryos form, how to select among them. Along with these decisions comes the illusion of having some control not only over the prenatal environment, but also over the genome itself.

 

*
 

During my first weeks of IVF, after various failed alternative treatments, I began reading Siddhartha Mukherjee’s book The Gene: An Intimate History. The question of heredity had suddenly taken on a new and frightening urgency. The human genome has over three billion letters of DNA; published as a book, Mukherjee tells us, it would cover 1.5 million pages. The quality of a person’s life (or the difference between life and death) could turn on a single letter within all that text.

At times it almost had the quality of a physical sensation: like standing beside some sort of vortex or gateway and feeling utterly overwhelmed by its volatility, by the infinity of possibilities that could emerge in the crossing of that threshold. I am cautious by nature, but there is no way to approach this vortex in safety. It is, at heart, a reckless act to bring someone into existence.

Still, I tried to make my requests to the heavens, to find a prayer to reiterate. But how to capture, in a few sentences, what you wish for the life of your child? How to voice something simple and pure and free of your own prejudices and agendas? I struggled to find the right words, the right incantation: that would ask for everything, but would not ask too much. That would please the gods. I wanted to ask only a thimbleful. But the moment I began, my wants would overspill. My prayers grew ever longer and more unwieldy; even I, who have no religion.

I felt a particular anxiety on the night before the “egg retrieval” and subsequent fertilisation. For weeks we had been hormonally stimulating my ovaries to generate as many eggs as possible in the hope of generating the most viable embryos. We would soon transition from what felt like infinite possible genomes to just a few; mere single or double digits.

To help select between them, these embryos were “graded” by assessing the appearance of their cellular structure. In some clinics, grading is now done by artificial intelligence, based on data sets of embryo images paired with pregnancy rates. AI’s reasoning is often opaque, and there is the possibility that it is guided by the wrong variables, as when an AI learned to distinguish images of wolves from images of huskies based on whether or not snow appeared in the photo. (As a group of Oxford ethicists put it, with some restraint: “mistakes of this kind have ethical significance when applied to selecting future children.”)

Over the past two decades, independently of grading, embryo selection has also increasingly involved preimplantation genetic testing (PGT). At present, PGT can do three things with a fairly high degree of accuracy: PGT-M can identify a huge range of monogenetic disorders, such as Huntington’s disease or cystic fibrosis; PGT-A can identity aneuploid embryos, meaning those with chromosomal deviations; and PGT-SR can test for chromosomal structural rearrangements. Since aneuploidy is a leading factor in failed implantation and miscarriage, some clinics encourage PGT-A to reduce the number of unsuccessful transfers.

More controversially, both empirically and morally, a few commercial laboratories now offer testing for polygenic risk (PGT-P), which analyses an embryo for physical and psychiatric conditions whose genetic origins are far more multiple, variable, and unclear than single-gene disorders. In Mukherjee’s telling, we are unsettlingly close to the future of procreation portrayed in Gattaca: where a smiling man in a lab coat, his manner not dissimilar to a car salesman, presents you with an optimal embryo selected through the ruthless application of genetic probabilities.

While we seem to be on the verge of these daunting new powers, and while some people are already playing with them, they are still a long way off in practical terms. As yet, PGT-P testing provides genetic risk estimates (the value of which is much contested) for heart disease, hypotension, some cancers, diabetes, and schizophrenia. But in theory the only limits to what can be divined through PGT are the limits of genetics, which are constantly moving outwards.

I supposedly knew better, but I was gradually transitioning into a kind of genetic determinist. Intellectually I would deny it, but subconsciously it was happening anyway. It was something about all the fluorescently lit waiting rooms in all the doctor’s offices; all the photos on all the brochures of magnified embryos beneath microscopes being pierced by needles. So what if there were intractable interplays with the environment? The nature of that interplay was established in no small part by the genes, I thought; and the environment was established in no small part by me, who was not as changeable as she sometimes seemed. Suddenly everything seemed to depend on the intricate pattern established by those billions of letters as they first fell.

I kept thinking about our embryos, of their different possible fates. Most often I wished there were a way to hand it all back to fate. Although, as I tried to remind myself, I had never really wrested it away. On the day of fertilisation, we had opened the door to the lab, and passed a container to a lanky man with a name tag: “Jonathan.” It was Jonathan who would be individually fertilising each of my eggs; injecting them with a sperm cell of his selection in a procedure known as “intracytoplasmic sperm injection,” or ICSI. Why, I tried to reason, could fate itself not take the form of a lanky man named Jonathan? Another embryologist, Gloria, would be the one to decide among the resulting embryos. Why could the hand of the universe not take the form of Gloria’s half-speculations as she pressed her eye against a microscope?

But at other times I could feel the lure of the future world. I wished that I could somehow glimpse the future of the embryos from the monochrome inchoate mass they presented beneath a microscope: that I could know some healthy and happy lives lay in wait; that in knowing, I could meet my prayers halfway. In my fear, in my utter bewilderment as I thought about all the billions of letters of DNA in all the millions of pages of the genome, I thought that in fact it would be wonderful to live in the future world. Wonderful to meet the man in the white coat, with the big smile, who would tell me assertively, with his perfect knowledge: here is the one.

 

*
 

From the moment we recognised heredity, we began trying to control it, to decide who should be able to pass on their genes, and who should be prevented from doing so. In the darkest parts of this history, which is in some respects still unfolding, nation-states have manipulated this knowledge in an effort to justify forced sterilisations, and even genocides, in the name of “genetic fitness.”

The present state of reproductive and genetic technology – and with it, the so-called “new eugenics” ​– claims to depart from this history. After all, the new eugenics is not practised by the state at all; it is practised by parents. It emerges from the expansion of their reproductive choices, rather than from their restriction. (Though in practice, given the profoundly unequal access to these technologies, the new eugenics is liable to “inadvertently” replicate the same discrimination against low-income and oppressed populations that the old eugenics pursued intentionally.)

One of the dominant images, and prevailing metaphors, for these proliferating choices has been that of “the genetic supermarket.” It is a vision of our worst consumerist impulses grotesquely manifested in a realm of life that ought to be most protected from them.

I understood the metaphor, and yet it did not capture how I felt. Instead of merely magnifying my sense of consumerist entitlement ​– leisurely clicking through catalogues of my future progeny, deciding which one would go best with the rug – the possibility of these choices was magnifying my sense of responsibility. That ever more of the risks and harms implicit in bringing someone into existence were coming to be, at least to some extent, within my control. That the potential pain and difficulty of someone else’s life would increasingly be mine to answer for.

Most bioethics literature on PGT has concerned its permissibility. What are the implications of these technologies for societal justice and equality? Under what circumstances, concerning which conditions, should people be permitted to access and use genetic information about their embryos? What do we express about the value of certain lives when we choose to end a life, or not to begin one, solely on the basis of a genetic condition? (Some disability rights activists argue that abortion is permissible unless it concerns a genetic condition. Others have defended the rights of parents to use PGT to select for certain genetic conditions, including deafness and dwarfism.)

But a separate part of this ethical debate revolves around the idea that PGT might be morally obligatory. Some ethicists have defended a “principle of procreative beneficence”: that insofar as we are able, we are morally obliged to endeavour to have the child, of our possible children, who would have the best chance of a good life. On these grounds, if PGT ever became safe and effective enough, it would be morally negligent to forsake it.

Recognising how few (if any) embryos people often have from which to select – and therefore how irrelevant alleged obligations of “choice” are in practice – proponents of procreative beneficence have pointed to the future possibilities of “gametogenesis,” in which gametes (egg and sperm cells) are derived from one’s own stem cells. The procedure has already been successfully trialled in mice and led to the birth of healthy pups: a mouse’s skin cell was reprogrammed into a stem cell, and then that stem cell was transformed into an egg cell. The race is currently on to perfect the process using human cells. If human gametogenesis were possible, and healthy gametes could be created in vitro, there would be no limit to how many different embryos we could each generate (thousands, tens of thousands). The smiling doctor would have boundless resources.

Many of these possibilities are still speculative. But it is intriguing, nevertheless, to observe our responses to these first forms of procreative genetic knowledge. All fertility doctors routinely transfer embryos that have not undergone genetic testing. Yet many fertility doctors refuse to knowingly transfer tested embryos that are at higher risk of genetic syndromes. That is to say: a risk that we are perfectly happy to take routinely becomes unconscionable – or that, presumably, is the logic – when we add just a little more knowledge. How will our appraisal of these risks change, and our sense of responsibility for them, as we add more knowledge still?

There have been many moral criticisms of the alleged principle of procreative beneficence. But one of the most prominent critiques is empirical: is there any scientific basis whatsoever to think that we will be able to gauge a worthwhile life, let alone the “best” life, on the basis of strands of DNA? After all, what we can appraise, identify, and understand genetically is vanishingly small in comparison to everything we cannot grasp. And what we can derive from the genome in isolation is increasingly in doubt, as we find that gene arrangement and expression are determined in no small part by a cell’s environment.

I say “we,” but, as ever, I have no idea where I should stand with this information. The turnoff I would have needed to take in order to have a genuine understanding of human genetics – its present possibilities and limitations – is so many miles back that I cannot really fathom a route to it. It does not help that the experts themselves seem to hold entirely conflicting beliefs, riven by ideological division and suspicion. Behavioural geneticists think polygenic scores will soon have something to tell us about the probability of personality traits and even skill sets, while other experts condemn the whole field as pure pseudoscience, as dangerous and ill-intended as phrenology.

Where does the boundary between what we can determine genetically morph into what is utterly and forever unknowable? And even where we can obtain knowledge, how do we keep in mind everything that it inevitably excludes? What idiotic choices might we be making as we try to pre-empt and appraise the value of a life – its irreducible meaning and worth – using little bars of green, amber, and red describing abstract estimates of genetic vulnerability?

When we imagine the future of reproductive technology, it is usually a future of more and more choice. A future where it is increasingly possible to exorcise yourself from many of the risks that have thus far been inextricable from the process of bringing someone into being. In a way, I felt as if I were living involuntarily within this future. But it was a half-formed, incomplete future, where I was left terrified in a range of new ways, but not quite protected. A time on the brink of knowledge, but without knowledge.

Sometimes I pictured us all – the army of the barren​​ ​ – at these event horizons of understanding; at the strange blurring of the most godlike and natural with the most clinical and medical. We were some of the first people to be tempted, taunted, and burdened by these new forms of knowing, and as such we offered a glimpse of the world to come. As we tried, in our pyjamas, hunched over search results, to somehow make sense of all of it: of the whole impossible heap of birth and death and heredity, of health and life and happiness.
 

It was our fourth scan, and our fourth month of pregnancy. At first (poppy seed, lentil) you try to hold a much-wanted pregnancy at a safe remove: it is a bundle of cells, you tell yourself, that may continue to develop or may not. But at some point (blueberry? lime? avocado?) you have to believe in it. You have to start loving the being that is forming within you; to imagine their future as your own.

The waiting room at the clinic was decorated with plaster-cast sculptures of babies’ faces, eerily reminiscent of death masks. You are asked to arrive early for your appointment, to fill out the necessary forms. On the patient consent form, they warn that 2% of people will find that their foetus has died since the previous scan. I recalled once again a cautionary line from Norman Rush’s novel Mortals: “With children you created more thin places in the world for hellmouth to break through.”

Our tiny child arrived on the screen. The sonographer began a series of exacting measurements determining the body’s proportions, and proclaimed happily each time that all was well. She referred warmly to the foetus as “the little miss,” joking about which of our features she had (big feet, “just like her mom”). She proceeded to examine the baby’s organs, monitoring the function of each, looking at the butterfly within the hemispheres of the brain, watching the bladder fill and empty. Then she fell silent.

After a minute, I continued our personification of the little miss, speculating about what she was up to. “None of what she’s doing is deliberate,” the sonographer said, firmly. “But she’s sucking her thumb?” I countered. “It’s an accident,” she said. She seemed to have shifted suddenly from the “baby daughter” discourse to something more removed: something closer to “bundle of cells.” It was only later that I realised that in the interlude between this transition, she must have seen the fateful signs that something terrible was amiss.

 

The scan was almost finished, but the sonographer said she was still struggling to get the right view of the heart. She went to fetch a colleague; the practice’s cardiac specialist, who took the seat beside me and quietly peered into the screen.

Hellmouth is the gentle inquiry: “Have you spoken to them yet?” Our sonographer timidly shook her head. “There’s a serious problem with the heart,” the doctor explained. To me, the screen showed the same inscrutable galaxies of black and grey movement. The tiny being on the screen was still wriggling. What did this mean for her?

I had spent months absently wondering about my child’s life. I was having a daughter! Would I be able to love her without resentment, the way all the other mothers failed? I prayed, I prayed. At home, I paged through Shaun Tan’s extraordinary wordless book The Arrival, and imagined my daughter next to me, as I explained the story of each image and tried to convey its culminative wisdom about strangeness and otherness, its lessons of love and compassion. I imagined an annual tradition of painting a mural in her bedroom for her birthday, celebrating whatever her new preoccupation was (perhaps birds one year, jungle cats the next).

And then, after all the daydreaming, some concrete information arrived. A condition called hypoplastic left heart syndrome, widely considered one of the most severe heart defects there is; uniformly fatal up until a couple of decades ago. Your child will spend her life in staged open-heart surgeries and on transplant lists, all with poor prognoses. If she survives, she will grow up in the clinical miserableness of NICU wards and children’s ICUs, poorly disguised by balloon-themed curtains and laminated children’s drawings thanking doctor so-and-so for saving their lives.

The doctors had looked, via sound, into my womb; they had peered into a heart the size of a legume and sought out its minuscule chambers and valves, and they had reported back with harrowing authority on the life that was to come, with all its extraordinary pains and struggles. Would we say “yes” to it?

I was anticipating further tests and confirmations; a series of opportunities for all of this to be proven wrong. But instead there were simply those two women’s solemn and certain faces. “Unless you have extreme religious convictions…” they said, trailing off.

When I got home, there was an email from the assessment centre, with the subject line “Urgent.” My heart leapt; they had made a mistake! But the attached report served only to confirm, in ever more horrible detail, everything they had just told us.  Why “urgent” I wondered? Saving a life is urgent. But ending one is something you can schedule in advance, for office hours.

 

*
 

In the days after the termination I looked at every creature – every person, every pigeon – and thought of nothing but their hearts, fully formed and beating. I looked at strangers with such amazement. Probably they did not like their thighs or their ears or their freckles or their feet; they wanted to be more like this, or less like that. But from where I was standing they were all so perfect, so obscenely lucky. 

                     

When I see the distribution of advantage in the world, it is so clear that none of it has anything to do with what is deserved. The suffering of other people is almost always senseless and evil, and nothing more. And yet in the case of one’s own suffering, it is hard not to think of it as communicative. It was because of all those prayers that had overspilled and displeased the gods. It was the hubris of the whole endeavour in the first place; all the ways of refusing to accept my fate. It was the incalculable power of my worry itself, that developed such heft and density that it helplessly attracted calamity towards itself. It was my general wastefulness and laziness and vanity and hypocrisy and lack of charity. The universe had come around to condemn me for all of it.

We were very lucky, the doctors kept saying, to have found out early. With less specialist care, this condition might not have been picked up until much later in pregnancy, or even missed until birth. Your baby handed to you after labour: her lips a little blue, not much of a crier. I longed for that different, more comprehensive form of luck, which I had in so many other spheres. Where you did not think about your good fortune at all. I wanted the luck that no one noticed or pointed out. The luck that was your due.

Heart defects most often strike out of nowhere, with no family history. In such cases they are “multifactorial,” involving a complex combination of genetic and environmental interactions that are poorly understood. After years submerged in the culture of the “precautionary principle,” in which I was cast as the sovereign controller of all risk to the unborn, I heard over and over again that “it’s nothing you’ve done.”

But it is hard for one paradigm to so quickly replace the other, and since no one could tell me why this had happened, I could not reasonably exclude the possibility that it happened because of me. That a single false move on my part, a single wrong decision, led to such catastrophe.

Each day brought a new conviction. It was the grey-water system in the garden. It was exhaust fumes from the road nearby. It was the coating on the nonstick pan. It was something in the tap water. It was my proximity to devices. It was some covert virus or bacteria. It was a nutritional deficit or a hormonal imbalance. It was the IVF itself: the months of synthetic estrogen and progesterone; the lab cultures and biopsies. It would not have happened if I had not chosen “ICSI.” The embryologist Jonathan had done it, inadvertently.

Some philosophers love to speak in proximate and distant worlds, but that way of conveying possibility never appealed to me. But at this time the proximity of my unlived life was almost unbearable. “I want the other future,” I wept feebly to my husband. As the months went by, it began to feel more distant, more impossible. But right at that awful turnoff, it was right beside me and vivid, and I could almost believe it existed. That in some alternative realm – thanks to some tiny, unknowable change – she had been spared; she had continued to thrive; she had been mine.

The thought at first consoled me. But if I allowed this consolation, then it meant that every other life was possible too, and that was too awful to contemplate. The devil’s imagination for the ways in which things could be terrible always seemed to outstrip god’s imagination for the ways in which they could be sublime. So rather close all those terrifying possibilities down, along with the yearned-for ones, and reconcile yourself to the world as it is. To what has come to pass. To the unwanted and yet endurable now.

At first I was too afraid to seek out the stories I knew must exist: of happy lives, despite the severity of the heart defect. But some months later, I went in search of them, finding groups online for parents raising an affected child. In one photograph: a young girl and her sister, sticking out their brightly-coloured tongues after eating their lollipops. In another: a young girl at the top of a mountain she had climbed with her dad. He was pure, radiant joy and pride beside her, and I imagined what the two of them had been through together: the years he had spent beside her in hospital beds; the tapestry of parental love and worry, woven so thick. I wondered if they would consider me a traitor for what I had done. If I was someone to whom this had actually happened, or just the opposite: some voyeur staring in – half relieved, but also half envious – at my unlived life.

*

 

If something rare and horrible happens to you, fairness would necessitate that you should be safest of all from it happening again. But most often, the opposite is true. If you have had two consecutive miscarriages, your risk of another goes up. If you struggled to conceive, your risk of losing the pregnancy is greater. If you needed a D&C, you are more likely to develop uterine scarring. If you had IVF, your risk of birth defects is higher. And if you had a pregnancy with a severe congenital heart defect? There too, the cards reshuffle and you are dealt a worse hand.

Like so, you can find yourself in a cascade of misfortune. I began to feel ridiculous, really, recounting the ever-new ways in which everything was going wrong – like one of those narcissists in “group” who was always trying to hold the floor with their misery. By the time I suspected that my late termination had led to uterine scarring, I could scarcely bring myself to tell anyone. It seemed so unlikely, and yet on the contrary, it is precisely what the odds dictate.

What could all of this have to do with the just gods I was always negotiating with? The ones who were punishing me in all the ways I deserved to be punished and who might be merciful if I mastered repentance at last. What gods who would listen to reason would tip the scales so steep? Each bad thing opening a door to a worse room, filled with more bad things, and with further doors.

“Recurrence risk.” A new, bespoke variety. If my risk of this happening the first time had been 1 in 10,000 births, as the report from the assessment centre indicated, what had they become? I was advised to seek a genetic counsellor, a relatively young profession, intended to help people navigate these bewildering forms of knowing. But of course I was already hundreds of pages into my own search; unqualified to be the interpreter of all this information, and yet interpreting it all the same.

I was searching everywhere for a number I could both live with and believe. I was trying to perceive the ground on which I was standing: how many thin places lay before me, how irresponsible it would be to take a step, how unnecessarily cautious it would be to stand still. But I could not find a stable answer. I saw recurrence authoritatively described as “low risk” but also “high risk.” And I felt the same way about it myself, as the sense of risk surged and waned.

One fact seemed unanimous, however: if one child had HLHS, a future sibling’s risk of having the condition increased sharply, as did their risk of having a different heart defect. Until recently, recurrence studies were carried out with family histories alone. But now studies included echocardiograms that diagnosed less severe heart conditions among relatives. With these echo findings included, the recurrence risk for heart defects soars: double figures and ominous.

How to situate it amongst all the other risks, inescapable and ordinary? A 20% risk of miscarrying in the first trimester; a 3% risk of loss later on; a 3-5% risk of congenital defects, maybe closer to 4-6% with IVF. There is such comfort in being like everyone else. In only risking what everyone else must risk. It is, after all, on the basis of such comparisons, rather than by any specific thresholds, that we ultimately determine which risks are rational and defensible, versus those that are crazed or reckless.

The more frightening numbers kept me up at night, but I never spoke of them to anyone. I did not want to give them a foothold in reality. Besides, my husband did not want to know any more. “All this information without any real knowledge,” he said, despairingly, when I consulted him again with a new clutch of my useless “findings”: recurrence estimates, risk factors, possible causes. He felt so sad for me, in my private hell of trying to understand something that is not yet understood, trying to predict a future that cannot yet be predicted.

At the end of our eventual consultation, the genetic counsellor itemised our testing options along with their stupefying price tags.. We had already ruled out chromosomal syndromes, but we could potentially do further genetic tests on the “products of conception” from the terminated pregnancy. Or we could genetically test our remaining embryos, looking for the few genes that have been associated with HLHS. But these tests would offer scant reassurance, since so much about the relevant hereditary mechanisms remains unknown.

I thought of the parents in my position a few decades ago, who had no estimates of recurrence at all, or for whom the unsettling findings of echocardiograms did not yet exist. And I wondered again about our responsibility for risk, and its relationship to knowledge. Did these parents risk less than me, in their not knowing? Would they have had less to blame themselves for should the same fate have unfolded again?

Then I thought about the parents in my situation a few decades from now, who might be in a very different epistemic position. For whom genetic testing might be able to yield more certain and meaningful results: something closer to a guarantee against this happening again; a promise not to begin a life which will either have to end so soon, or else suffer so much.

I felt stuck in the exact wrong moment. A time of perfectly incomplete knowledge. When I could know so much more about all the ways in which I was at risk – where I could almost describe it as an exact percentage – but where there was nothing I could do about any of it.

Gattaca is a dystopia. Society has been stratified into a genetic caste system, which determines all of life’s opportunities. But Gattaca is also a utopia of sorts, a time when everything that can become known has become known. Stuck within my imperfect opacity – where we know something is genetic, but cannot say which genes; where we know environmental factors contributed, but cannot say which factors – I almost yearned for that brutal, clarifying future. One in which you would not have to hear, “Have you spoken to them yet?” When I was viewing it from this anxious vantage I could not help rooting for these dystopian geneticists and the parents who visit them. Why should they not be spared a few of the thin places where hell breaks through? There are always plenty of thin places to go around.

In so many ways, in all the tangible ways, the deal I was forced to strike with risk had never been more favourable. I was the beneficiary of so many advances, over so many centuries, which escorted me to a place of unprecedented safety. I could adopt the “precautionary principle.” I could weigh the harms and benefits of different decisions. I could monitor, prevent, manage, and treat. I could constantly renegotiate what I risked on behalf of myself, and on behalf of a future child, and I could even succeed in making it smaller and smaller.

The vortex, the entrance to life itself, has never asked less of us than it does now. Yet somehow – confronted by so much information, but with so little real knowledge​​ – it can sometimes feel like we have never risked more.

 

*
 

About a month after the termination, I went running on Table Mountain. Out of breath, I rested on a low stone wall abutting a reservoir and dropped my hand into the dark tannic water beside me. As I stared at the enormous blue gum trees above, my precious bunch of keys, without which I could barely function, slid out of my pocket and plunged into the water.

I went in after them, expecting the water to be waist-deep like the wall, but instead it was seemingly bottomless. It took me several deep-breathed dives to find the reservoir floor, and more still to build up the courage to start searching it with my hands in the darkness, covered everywhere in menacing sticks and algal slime. The area in which the keys could possibly have fallen was so small, and yet each time I dove, I found nothing. The sky was darkening, I was weakening, and eventually I pulled myself out empty-handed and soaked through, and walked until I found a stranger from whom I could beg for a lift home.

When I think of the past few years, my mind often turns to the image of myself diving around aimlessly in that darkness. How close I must have been each time! Yet how doomed it was from the outset. How easy it would have been in clear water! Yet how impossible it was in the gloom. And how much courage it took (pathetic though it looked) to try and to fail, to keep trying and to keep failing.

As it was, we were going to try again, one last time. I was going to have surgery to treat the uterine scarring. We were going to go back to the fertility clinic, back to the cryopreservation freezers, back to the vortex.

In her poem “Utopia,” Wisława Szymborska describes an island of perfect knowledge and perfect clarity. There are no misunderstandings, mistakes, or terrifying unknowns. There is no anxiety, for all is perfectly navigable. There is no disillusionment either, for the meaning of everything, its essence, is all there to be grasped. But the island is completely deserted. The few footprints all lead into the surrounding sea:

 

As if all you can do here is leave

and plunge, never to return, into the depths.
 

Into unfathomable life.

 

A few months later and I was in an ancient synagogue in Kochi, India. It was, I felt certain, a sacred place. Small and wooden, with a ceiling from which glass lamps lit by candles hung, the floor a matrix of tiles in colourful patterns. The old wooden benches, uneven, packed in tightly, evoking generations of congregants and of worship, going back hundreds of years.

Here, I thought, I will make my final prayer: for the child I might have, for the family we might become, for myself. The hazy light spilled through the stained-glass windows. The hushed shuffles of the barefooted visitors around me. The vaulted ceiling and the gentle smell of candle wax and incense.

I waited in that reverent space, but the words would not come. The prayer would not form. I had nothing to ask for anymore. Even to ask was to claim more power than I had, and I no longer wanted to pretend otherwise.

*************

This essay was first published in the Spring 2023 issue of The Yale Review. It was selected among the "Notable Essays & Nonfiction" in the 2024 edition of Best American Essays, and republished in the 2025 anthology The Interpreters: South Africa's New Nonfiction edited by Hedley Twidle and Sean Christie.

bottom of page