PART I
Theoretical Perspectives Introduction: The Predicament of Childlessness and the Baby Business
Experiences from Assisted Fertilization
Firsthand thinkers mediate upon things; the others on problems. We must live face to face with being, and not with the mind.
E.M. Cioran (1998: 43)
Reproductive medicine and assisted fertilization are dealing with human reproduction, the elementary processes of life, and a central concern in any culture or human society (Ginsburg and Rapp, 1991). Indeed, we need to live our lives in the immediate connection to things. In Platonist thinking and in the Christian tradition, the material, everyday life world is downplayed and instead the âhigherâ and âeternalâ issues beyond this crude and unfulfilled world are acquiring prestige and status.1 However, there is nothing that makes human beings more acutely aware of their own material and biological existence than the loss of health (Frank, 1995). Instantly, the world around us crumbles as our human bodies cease to function as anticipated and we easily surrender to faith and folk belief as we hope to be able to restore ourselves. When the body hurts and aches, the higher values and intellectual discourse quickly loses its relevance for us. Rather than starting a research monograph on assisted fertilization with the theoretical domain, we will thus first encounter a few persons, couples of women and men, with first-hand experience of lending themselves to the practices of assisted fertilization.
Rather than outlining a sophisticated conceptual framework or pointing at statistics indicating the relevance and scope of assisted fertilization, we will now enter this inquiry through a few life stories. These life stories, being told by two couples, one couple with positive experience from assisted fertilization inasmuch as they eventually became parents and today have a son, and one couple with a more negative experience filled with exhausting years of hope and despair ending with the insight that they would not be able to become parents, are by no means representative of anything else but their own experiences. Nevertheless, these stories being told may help us enter a more complex narrative including a variety of heterogeneous resources and conditions that taken together constitute what is called assisted fertilization. If nothing else, these vignettes from the world of assisted fertilization may help us think of these advanced technoscientific procedures and field not as an abstract system of interrelated and in many ways obscure and esoteric activities but as series of encounters and activities that in their own ways constitute assisted fertilization as what it is, as an encounter with technoscientific expertise that in many ways is impressive in what it is capable of accomplishing or at times even intimidating but that nevertheless is dealing with human reproductive materials under highly specific conditions. Hopefully assisted fertilization, its accomplishments and limitations, may become intelligible in this volume.
The first couple suffered from the femaleâs illness, endometriosis, a medical condition reducing fertility. When deciding to seek assisted fertilization help, they were not naĂŻve regarding their chances of becoming parents: âThey [clinic staff] did not make any promises given [the womanâs] diagnosis. They have never been able to say very much besides general statements ⌠So I thought they conveyed adequate information and there were no false expectations but they were rather straightforwardâ (Male IVF patient, Couple 1). The initial hope that the assisted fertilization therapy would be able to help them become parents soon led to disappointment and despair. The couple endured a four-year period where they returned to the clinic for repeated treatment cycles after failing to get pregnant. After undergoing a few failed treatment cycles the woman learned to anticipate and feel the reactions and shivering of her body:
In the beginning, I was full of hopes and really believed in this, analyzing every single little feeling, that âthis might be something this time,â but then you were devastated when it didnât work. After a few times, I tried to convince myself that this time I mustnât become sad if it fails but nevertheless you were totally broken just the same. Every single time! Those days when you realized that this wonât work this time either, you were broken down ⌠but then through the denial or repression that I used [I could continue]. (Female IVF patient, Couple 1)
She continues:
Either you start to bleed or if time passes you can take a [pregnancy] test at home. But I have been able to sense it every single time. I get this ache ⌠I get certain symptoms, like an ache in my thighs and being heavy in the legs and all sorts of things, so I have been a hundred percent sure that this is it! A few days before the actual event [the miscarriage]. (Female IVF patient, Couple 1)
Every single miscarriage was a painful, emotional event wherein the couple suffered a wordless sense of disappointment regardless of their understanding of the womanâs medical condition. To cope with the situation in an orderly and somewhat emotionally detached manner was therefore of great importance. When they asked the clinicians why there was such limited progress, they were not able to get any clarifying answers:
After a few treatment cycles, we were starting to ⌠become concerned regarding the lack of progress, then I asked a few questions to the doctors ⌠then they were telling us that âthere are better chances with the fresh trials rather than with the frozen [embryos] and that the success rate was higher in such casesâ ⌠When we have done like, six, seven, eight embryos, they were starting to tell us that they were concerned regarding the lack of progress. (Female IVF patient, Couple 1)
Rather than telling their families and friends, the couple had decided not to tell anyone, potentially making the ordeal an even more demanding experience as they had to maintain a secret everyday life. The reason for this secrecy was to avoid further disappointment among, for example, their parents: âWe didnât want to carry their [parentsâ] expectations as well ⌠Of course we knew ⌠and they have given us a few hints as well ⌠that my parents were wondering why there were no grandchildren coming,â the woman argued.
As the years passed, the couple almost lost count of how many cycles they had undergone. After the second campaign of treatment, around the tenth cycle, they both lost their faith in fulfilling their dreams of parenthood but continued until the fifteenth cycle, just to be sure that they âhad done everything they possibly couldâ: âIt felt definite after the second round of treatments. The third round was just a mere formality, more than a real, serious attemptâ (Male IVF patient, Couple 1). He continued: âWe have done what we could and we cannot go any further. Now we have to live with that. Thereâs nothing we could have done differently. And that feels goodâ (Male IVF patient, Couple 1). Even though the man claimed that he feels good about having the energy and determination to be able to do all that was asked from them, there is still a strong sense of disappointment and disillusion: âI suppose we were prepared, more or less, but it felt like ⌠well, we had tried for many years ⌠consuming so much energy both from us and from work ⌠ruining the body, and things felt ⌠well, unfulfilledâ (Female IVF patient, Couple 1).
Needless to say, for the couple these were not happy years, years filled with joy and laughter. Instead, the period was exhausting as everyday life had to be maintained at the same time as therapy continued:
I donât think I had any regular everyday life during these years. Things have been exhausting and both of us have been tired because of all the hopes and the sadness you have to live with when things came out this way. The medication hasnât been particularly mild ⌠You get emotionally labile ⌠It is tough. (Female IVF patient, Couple 1)
There are few possibilities for identifying any positive experiences from these years in the clinic. At least, being able to keep their relationship despite the pressure was regarded as a joint accomplishment:
The best part is that weâre still in a relationship, that it did last ⌠It is quite demanding to endure this kind of situation. First, the grief in itself in not being able to become parents when you want to and then the sense of guilt on my part, being the source of all this. It is not a happy situation. (Female IVF patient, Couple 1)
When being asked about their view of the work in the clinic, the couple lacked a sense of an integrated view of their case, moving back and forth between the womanâs endometriosis specialist and the clinic: âThere is no integrated perspective. But we have been very well treated by all midwives. If itâs been one professional category that has been nice throughout, it is themâevery single one of them!â (Female IVF patient, Couple 1).
Despite their inability to become parents, they believe the Swedish healthcare policy is quite âgenerousâ in letting them undergo no less than 15 treatment cycles:
Female IVF patient, Couple 1: Today, Iâd say it is quite generous, actually.
Male IVF patient, Couple 1: Yes, I think so too ⌠We have been given like fourteen or fifteen treatment cycles and that is amazing when you think about it. You need to say that it is generous.
Adoption is not necessarily the solution for the couple as they regard that as an âentirely different thingâ than having a child of oneâs own. âThat would be another issue to handle and think through if we would be willing to do that,â the woman responded. âIt is like night and day. There are like eleven new issues popping up in comparison to having children of oneâs own ⌠So itâs very different,â the man added. Adoption is at best a form of substitute to giving birth to oneâs own biological children. In summary, the couple was pleased they had the stamina and energy to follow their path chosen to its very end but besides that the assisted fertilization therapy was, despite limited expectation, an exhausting and ultimately disheartening experience. Also the time spent in the clinic was complicated to predict: âWhen we started, we did not know how long time it would take ⌠We did not believe it would last for four years,â the man reflected.
The second couple could tell a less heartbreaking story inasmuch as they managed to become parents, but their story also includes failures and despair. As with the first couple, the female is suffering from a medical condition but in contrast to the first couple, the second couple started to consider adoption but they were turned down because of the manâs age: âWe were quite confused [after being turned down by the adoption bureau] and we felt like âthis is the end of the story,ââ the woman said. Turning to the assisted fertilization clinic, the first step was the hormone therapy to enhance ovulation. The woman said she had a âterrible anxietyâ regarding the therapy after hearing âhorror storiesâ regarding the uses of hormones: âJanuary was a black month, not because I was possibly becoming pregnant but because I feared becoming ill ⌠You always hear these horror stories about what happens during the hormone therapyâ (Female IVF patient, Couple 2). She continued: âI called them [the clinic] totally messed up and told them about my concerns. I wanted them to say something like âone in three million suffer from such side-effects,â but instead they told me that âthis is your decision.â Well, they told me so, but I was so frustrated and even more stressed by not getting any advice or counselingâ (Female IVF patient, Couple 2).
When telling her husband about her concerns, he said that he was willing to drop the entire idea of assisted fertilization if the cost would be a constant ongoing anxiety for his wife. The woman declined all such ideas:
We were almost beginning to fight, because he said that âwell, we donât need to do this if you are suffering this much,â but I said no! (Female IVF patient, Couple 2)
I just wanted to emphasize that this was not a life-or-death matter for us, that we needed to have a child regardless of the costs ⌠In that case, we could terminate the process. (Male IVF patient, Couple 2)
After some time, the woman managed to handle her fears and experienced relatively little side effects. The next unpleasant experience was the egg retrieval, perhaps the single most unnerving experience:
And then they retrieved the eggs and that was probably the most horrible thing in the entire process. It was no walk in the park, I can tell you. Youâre like lying down in this gynecology chair and you get loads of morphine but that is the only good part about it ⌠I had to ask them all the time, âmore morphine, pleaseâ because it was really painful. (Female IVF patient, Couple 2)
Using a needle to enter the ovaries through the vagina, the egg retrieval is a most advanced procedure that safely retrieves a number of oocytes, unfertilized egg cells, to be fertilized in the laboratory. After 36 hours, the couple returned to the clinic for the embryo transfer. After the transfer, a short period of waiting for results led to a disastrous outcome:
Female IVF patient, Couple 2: And then on the Sunday we returned to make the first transfer. They had six eggs all being fertilized. Four of them were accepted because they need to be perfectly divided and everything ⌠Then came the two most dreadful weeks. Even before I had made the pregnancy test, I woke up this morning bleeding ⌠it was terrible ⌠I just cried ⌠I was âthe worldâs least successful womanâ ⌠Everything was totally black and I felt this is not going to end as we planned for.
Researcher: So it felt like a personal failure?
Female IVF patient, Couple 2: Yes, it was very dramatic. I think I cried for three straight hours.
The woman strongly felt the miscarriage was a personal failure and responded very emotionally. Her husband, having friends successfully undergoing the treatment and becoming parents, knew that it is not very common to succeed in the first attempt and kept calm. His wife was at times annoyed by this attitude: âAt times, I thought he was just so insensitive when telling me [to relax and calm down] but at the same time it felt very good to have someone standing firmly on the groundâ (Female IVF patient, Couple 2). Unlike the first couple, the second couple decided to share their predicament with friends and families so they could get their support: âSome people tell no one but I felt, and [the husband] did the same, that ⌠unless I tell anyone, there is no one to help me when I am sad because things may go terribly wrong. Thatâs me, anyway, rather speaking freely so people are informedâ (Female IVF patient, Couple 2).
The couple continued the therapy, using one of the embryos in the freezer, and this time the outcome was different. The woman could account for the details when she realized she was pregnant:
It was ten to five in the morning when I did the pregnancy test. I was sitting there, half asleep and just all of a sudden, What!? I just bounced up to the second floor where [the husband] was sleeping, telling him âIâm pregnant.â And heâs like âGreat!â I was lying there, eyes wide open, not a bit tired and waiting for the morning to come. When he woke up I told him again, and he said like âYes, I heard you the first time. Brilliant!â (Female IVF patient, Couple 2)
This time, the pregnancy ended with the birth of a healthy son in 2009 and today they live a family life similar to that of millions of other families. Especially the woman expressed her fascination over the fact that the once frozen embryo could be transformed to a living baby: âHe [the son] was frozen for like two months. Only that is a miracle! It is so wonderful ⌠I am so fascinated by the fact that the embryo has been in the freezerâ (Female IVF patient, Couple 2). The other side of coin is that the embryos still in the freezer in the clinic become a concern, an issue to be eventually dealt with:
It [the embryos] can stay in the freezer until 2013, a five year period I believe ⌠If we have not made the second transfer, I think it will be hard to have it destroyed since we know what came out of it ⌠But weâll cope with that in due time ⌠We have decided since long that there will be no more [children]. But it is haunting us, being there in the freezer ⌠That is the case. (Female IVF patient, Couple 2)
For instance, during the therapy, the couple were asked if they would agree to donate embryos to stem cell research after their embryos had passed their five years in the freezerâthe maximum period for embryo storage according to Swedish lawâbut, after long discussions, they decided that they did not want to donate their embryos. âWe were not willing to donate to stem cell research ⌠but we agreed on something elseâbut not stem cell research. We didnât want that ⌠We were talking quite a bit about it. It felt like some kind of violation of the personal integrityâ (Female IVF patient, Couple 2). While embryos are destroyed after five years, the couple felt there were too close connections between the embryos in the freezer and their son, leading to their joint decision.
When being asked about their experience from the assisted fertilization clinics, the second couple, just like the first couple, did not develop any personal contacts in the clinics but were rather treated as patients in an anonymous healthcare process: âWhat is missing are the personal contacts. I know the system is based on standardization ⌠[But] in assisted fertilization it is so important to have this kind of continuity. And I cannot say we saw much of that,â the man argued. âIt is a âdisruptive relationshipâ [with the clinic staff] you may say,â the woman added. Despite this sense of lack of personal relations in the healthcare work, the outcome from the therapy was what was hoped for, a child to care for.
The experiences of these two couples may or may not be typical or representative of how assisted fertilization therapies work or unfold. Some become parents, but many donât; hopes and expectations accompany the physical ordeals or even sufferings of the female patient; limited theoretical and practical understanding of the human reproductive processes and organs prevents credible explanations for both failures and successful pregnancies; ethical and practical issues needs to be addressed en route. The assisted fertilization clinic is a site where human hopes and âbiological instinctsâ (used here for the lack of a better term) are bound up with advanced technoscientific apparatuses and procedures. The assisted fertilization clinics are no âwonder factoriesâ managing to accomplish anything but every time they succeed in producing new babies it is regarded as the wonder of life by the lucky parents. Assisted fertilization clinics are both deeply seated in human needs and aspirations at the same time as they are advanced technological sites. This venturing into the secrets of human reproduction is a fascinating endeavor, and numerous couples and single women have been able to take advantage of this clinical expertise. At the same time, failure and despair accompany the clinical work, leaving many couples, like the first couple above, in a situation where they gradually reach the painful insight that even the state-of-the-art technosciences may not be able to overcome the hurdles put up by nature.
In the contemporary era, childlessness is not only an unfortunate predicament beyond human influence but is also transformed into a âmedical conditionâ that may be corrected and modified in clinical procedures. Reproductive medicine gives hope to sub-fertile couples but also leads to a variety of social concerns and ethical issues to be handled and debated. In addition, assisted fertilization work is organized on basis of certain principles and rationales that have been subject to relatively little scholarly attention. In the following, this technoscientific domain of work and economizing will be explored in greater detail.
The Baby Business
In 1932, Aldous Huxley published his dystopian vision of the future world, the emblematic novel Brave New World. Unlike George Orwellâs equally famous 1984, Huxleyâs image of the future is not a totalitarian society in the tradition of Nazi Germany or Stalin Soviet Union wherein people are oppressed on basis of an intricate system of surveillance, control and penal practices. For Orwell, the future in the 1980s would merely be a continuation and amplification of what was already observable in the 1930s in fascist and communist countries in Europe.
Huxley was more visionary. In his brave new world, people are no longer oppressed in the traditional sense of the term because they do not experience any oppression. Instead, Huxley portrays a society wherein science and technology have acquired a hegemonic position and where human happiness is accomplished on the basis of pharmaceutical substances, a widely used drug called soma. Perhaps the most spectacular accomplishment of this future society is that rather than resting on ânatur...