Patient and public involvement statement

The research questions that guided the research project of which this article is part developed from my previous research on women’s experiences of living with a congenital absence of vagina and uterus.56 As such, the overall project drew indirectly on perspectives of affected individuals and involved affected individuals explicitly through its use of qualitative interviews as its method for data collection. Furthermore, the qualitative research design of the project, which had been approved by the regional ethics board, led to the aims and research questions being continuously reconsidered and developed in light of the gathered data. In this way, the research questions were guided by the experiences, expectations and preferences with respect to UTx-IVF of those affected. Results from the project will be disseminated through a broad range of channels: in press releases from the university; through social media (such as my research blog and the social media channels used by my department); networks that gather women with UFI; in Swedish on a Swedish Wikipedia page on UTx-IVF (to be created) that will include perspectives from medical humanities and on the existing English Wikipedia page on UTx-IVF.

Asking mum? Expected and disrupted entanglements

I’d be happy to, why not? …]57 You are my beloved daughter.

The quotation above, from Eva about her mother’s response when asked about donation, is typical: most of the interviewees told of how their mothers had stated that it was obvious to say ‘Yes’ when asked about donating their uterus. While the interviewees pondered on the risks, most of them said that their mother seemed sure that they wanted to donate, a pattern also seen among parents who are asked to donate a kidney.58 Agnes, for example, said that her mother had been very assertive about her willingness to donate.

Because of course you think about that [the risks] too, about mom and all that. But mom was so sure about this the entire time. She just said: “I’ll do it, 100%. You don’t even have to think about it”, you know. She just said: “You don’t even have to think about my risks, because I’ve already thought about them, *you know*.59

Most of the interviewees also said that, despite the risks, it felt obvious for them to ask their mother. In many cases, they stressed that they had talked to their mother about the possibility of donation when they had found out that they did not have a uterus, and long before investigating transplantation. However, many also stressed that it did not feel important to obtain a uterus from their mother as such. One of them, Emma, had not seriously investigated the possibility of UTx-IVF when we met the first time, but saw it as a future possibility.

Well, my mother said very early on that “I’ll do this”, you know. So I feel that I’ve always known that there is an alternative. But I don’t think… it’s not… If you think about it only in theory, I don’t think it matters that much. Because it is not something that you keep afterward. As I’ve understood it. They will take it out. When *you are done*, you know. So it feels more as a… as means for it to work out well, rather than a question of it feeling right.

In order to transfer a uterus from one body to another it needs—to use Callon’s conceptualisation—to be physically disentangled from the body of the donor and then re-entangled in the body of the recipient. However, before the disentanglement of the uterus from the donor’s body can take place, it must have been agreed that the uterus will be disentangled a second time—from the body of the recipient. This ephemeral60 feature of UTx-IVF was what Emma drew on as she considered whom to approach for a donation. Since the uterus would not stay in her body for life, but would be removed within a certain period and after a predefined number of pregnancies, it became not primarily a matter of it feeling right, but a matter of feasibility—of simply making it all ‘work out well’. For her, the knowledge of future disentanglement decreased the importance of who would become her donor. Her story suggested that this however might be something that she would consider more carefully if future disentanglement was not required. Furthermore, Emma stressed that since her mother had offered to donate early on, she had always known that this was an alternative. Hence, the proximity of a potential donor provided comfort and reassurance of a future in which her infertility could be managed.

Occasionally, the question of a donation illuminated more explicit expectations on the mother-daughter relationship. Such expectations were most apparent in Melinda’s story of her mother’s response when approached with the question of donation. Melinda described how she had hoped that her mother would donate, but her mother had declared quite early on that she would not want to. It was at this point, Melinda emphasised, that ‘one of the greatest rifts between us started to grow’. Melinda felt, she explained, that her mother had not ‘taken on that “motherly” responsibility’ when Melinda was growing up.

And when she said that [that she would not donate], then I realized that: “Shit, where is the love between child [sic]… and daughter?”. Because if I had had a child then I would have given a kidney, anything. You would do anything for your child.

When her mother considered things like cosmetic results and menopause, Melinda felt ‘Well, she can’t have the right kind of love for her child”. Her mother’s response had fostered an embitterment in Melinda and even if her mother since then had asked for forgiveness and offered to donate, Melinda was still sure about her stance. ‘I don’t want anything from her!’ she underscored, adding that it would feel a lot better to have a uterus from a deceased donor. Melinda had been told to let go of that thought and to be grateful, but she was adamant; ‘I don’t want anything from her inside of me’.

Indeed, the way in which Melinda described her own reaction to her mother’s response was an exception in my material. Interviewees in general stated that they understood any hesitation from their mother and emphasised that their mother had been more assertive about wanting to donate than the interviewee about receiving. Nevertheless, I find Melinda’s story to be important because it illustrates what failed expectations can lead to. In Melinda’s case, the mother-daughter relationship was expected to constitute a relational entanglement in which (physical) disentanglement (from the uterus on her mother’s part) was taken for granted. When this expectation was not met, it resulted, as Melinda put it, in a ‘rift’ and an ‘embitterment’, which made a relational re-entanglement seem impossible and made a future physical entanglement through transplantation seem unthinkable.

The ‘obviousness’ of mother-to-daughter donation that accounts in the first pattern expressed could, at first glance, be seen as shaped by two facts: that it was required that you bring your own, preferably related, donor when seeking to take part in the research on UTx-IVF in the Swedish context, and that your donor should have had successful pregnancies and not want any more children. In light of these requirements, which limited from the onset the recipients’ choices and options one’s mother may stand out as one’s primary donor candidate when searching for a donor in the Swedish context. However, several of the interviewees said that they had talked with their mothers about donation long before being aware of these requirements, which indicates that the obviousness of mother-to-daughter donation is not simply a matter of matching the requirements. While few of the interviewees explicitly elaborated on the reasons that mother-to-daughter donation is considered to be obvious, most of them did stress that it was not important, as such, to have their mother as a donor. Hence, the obviousness was not construed as a matter of maintaining bio-intimacy by keeping donation ‘in the family’, which Kroløkke and Nebeling61 suggest is enacted in UTx-IVF. Neither was it construed as a matter of providing a specific corporeal connectedness with a child-to-be and thus it, at least partly, contrasts with how women with a congenital absence of the uterus sometimes frame UTx-IVF.62

Instead, Emma’s and Melinda’s stories illustrate two other ways to understand the obviousness. In light of the ephemeral character of UTx-IVF, Emma’s story exemplifies how the obviousness can be construed as a matter of feasibility and proximity. It is possible that the knowledge that the organ is only temporary, and is not given to ensure survival but to enable gestational and genetic parenthood mitigates the concerns about anticipated contingencies with respect to embodiment, relationality and subjectivity that occur in other forms of organ donation.63–65 At the same time, by offering ‘reproductive potential’66 rather than survival, UTx-IVF may require other negotiations of expectations and relationships. As Melinda’s story exemplifies, the question of donation can make explicit expectations on the mother-daughter relationship, and it may call for consideration and negotiations, especially when the request is denied.

Similar to other reproductive transfers between related subjects67 and organ transfers from parents to their children,68 UTx-IVF involves many layers of relational entanglements that calls for management. However, the first pattern—I suggest—specifically brings into focus how the very possibility of transferring a uterus, make explicit certain specificities of UTx-IVF with respect to negations of and expectations on established entanglements between embodied subjects. It details how the ephemeral character of UTx-IVF may mitigate certain contingencies, and requires that uterus recipients already when considering such a transfer prepare to disentangle from the organ that they may receive. Furthermore, in light of the possibility of transferring a uterus, specific expectations on postmenopausal mothers, from others as well as from mothers themselves may emerge. In this way, the first pattern indicates how normative expectations on what motherhood involves may become enacted as UTx-IVF continues to unfold.

Too much to ask for? Prospective donors and distributed entanglements

It said that you were supposed to get the uterus from a relative and then you started thinking: “Okay, if it’s me, who will give me one?” and then: “Oh my god, are you supposed to ask… or are they supposed to offer?” or … you know: “What if you are putting their life at risk, those who donate their uterus?”. You know there were lots of those questions, I think. Lots of them.

Ellen’s reflections above exemplify considerations of ‘whom’ and ‘how’ to ask for a donation that the interviewees emphasised as they told of their search for a donor. Central to these considerations was the idea that potential donors had to be ‘past the stage of having children’, which made the interviewees reluctant to ask sisters and friends who were about the same age as themselves. Mira, for example, explained that she had not told many friends about her condition since she was ashamed and she would, therefore, feel uncomfortable asking them. And it would be impossible to ask her sister:

I can’t ask my sister, because she hasn’t started a family yet. She has to have the chance to do that first.

They had not talked about this, Mira explained, but she had recently started to think about why her sister had not had children despite being in a stable relationship and having a permanent job. It feels as if she is waiting for me, Mira said. She continued:

I can’t ask her to volunteer. Because then…I’ll deprive her of something.

Mira’s reasoning showed how women of the same age as the interviewees were considered to be unapproachable as potential donors since donation would deprive them of the opportunity of pregnancy and a ‘normal’ life trajectory. In describing this ‘unapproachability’, the interviewees thus also drew on certain assumptions about the plans and desires of women of the same age when it comes to pregnancy and children. These assumptions, in turn, convey normative notions of how the life-course of young women is expected to be organised, making possible what Judith Halberstam calls a ‘reproductive temporality’69 with the building of a family at its core. This had to be taken into account when considering potential donors. Consequently, the interviewees emphasised, once your mother has been asked, you may not have a long list of other potential donors.

Related to how they emphasised that certain persons would be unapproachable, the interviewees emphasised, although in some cases implicitly, the reproductive purpose of the uterus. Victoria, for example, explained that to her, ‘that that’s the only thing that it (the uterus) is made for: children’. Mira reflected on the perspective of potential donors:

…it’s complicated to donate too, you can’t just…I think. But at the same time, I believe that many who could imagine themselves in this situation [of being in need of a uterus] would still think: “Well, you know, I don’t need it anymore, so why would I keep it? Then I might just as well donate it, if it’s possible”. That’s what I’d think, anyway. If there was a match with someone.

The interviewees’ emphasis on the importance of considering the reproductive temporality of potential donors—by underscoring that donors had to be ‘past the stage’ of having children—illustrates, I suggest, expectations on the life trajectory of women in reproductive age. The interviewees’ accounts express assumptions about a desire for pregnancy and (genetic and gestational) children, and that the uterus loses its meaning when a woman has passed reproductive age. When you are past the stage of having children, you are ‘done with’ your uterus, and thus it is possible that it is taken for granted that you are a potential donor. This way of reasoning also echoes ideas of function found in the medical discourse on uterus donation, where it is argued, for example, that—in contrast to other forms of live organ donation—the uterus has ‘exhausted (its) function for the donor, and its loss does not alter any present or future physiological function’.70

While uterus donation through such discourses becomes positioned as a rather simple matter of giving away an organ no longer in use, the interviewees indicated at the same time that it might not be such a simple matter after all. This became apparent as they described their difficulties in asking for a donation and the difficulties of potential donors in responding to such a request. Anna mentioned both the physical risks for the donor and relational contingencies that could emerge from the question of donation. She had not, so far, found a uterus that she would ‘feel good about having’ and she had not had anyone tell her “Hi, you can have mine”. She explained that she did try to raise the question with one family member but, Anna noticed, ‘she wasn’t really ready to go through with it’. Anna had also asked her mother.

And she [her mother] was OK with it, but then [a family member] started to influence me: “What if something happens?” and “Is it worth it?”, and then I felt guilty and…and then I told her: “No, I don’t want to go through with it”.

Donation, this account illustrates, may not be obvious to everyone and the risks may be considered to outweigh the possible benefits. Furthermore, in showing how the question of donation became a concern that involved not only Anna and her mother but also other family members, it illustrates how the question of donation can become a concern that involves others with whom the interviewee is intimately entangled. The management of entanglements that the question of donation instigated was thus not confined to the recipient-donor relationship, but distributed across the intimate entanglements of which they were part.

Like Anna, other interviewees emphasised that a uterus is not something that you are offered on a daily basis. Sara, for example, said that it is not ‘like you go around asking “Could you consider being my donor?”’ However, two close relatives had indeed offered to donate as soon as they found out that Sara was looking for a uterus. They both said, ‘Take mine!’, Sara recalled, but pointed out that: ‘That’s an easy thing to say’, and that one of them was ‘terrified’ of transplantation. As Sara’s mother had offered to donate at an early stage, Sara had never followed up on her relatives’ offer. Like Anna, Sara expressed concern about risks, although in her case she emphasised the relational risks more than the physical ones.

But… because I don’t want her [her mother] to feel… guilty. And I don’t think she will, *because she is so fascinated by the whole thing*. What she is afraid of is that she will not be…approved. So that she’ll disappoint me. But she could never disappoint me! But I don’t think that she sees that, herself. And I can understand that, in a way.

While Sara elsewhere made it quite clear that her mother had always expressed a willingness to donate, she indicates in this account that the offer was accompanied by certain relational riders, such as the risk of guilt and disappointment. Hence, the main issue was not what transplantation might do to the recipient’s or the donor’s body, but what a failed transplantation would do to the already established relational mother-daughter entanglement.

Although the first pattern comprises accounts that positioned it as obvious and fairly uncomplicated to disentangle the uterus from the donor’s embodied self, the examples of the second pattern, I suggest, illustrate that physical risks for the donor as well as emotional risks—such as troublesome feelings of guilt and responsibility for the organ after transplantation—were taken into account when considering potential donors. While Anna’s account shows how these concerns were distributed and negotiated within the family, Sara’s account reveals a worry that feelings of guilt and disappointment would disrupt her relationship with her mother, and thus impede relational re-entanglement post-transplantation.

The reproductive function of the uterus was often emphasised as the interviewees considered whom they felt it was possible to approach with the question of donation. Yet, as the interviewees described their deliberations, it became clear that not everyone for whom having children is no longer relevant is approachable. It might prove not to be easy to disentangle from the uterus, and some might find donation truly terrifying. To ask someone close to you for a uterus—be it your mother or someone else—requires considerations not only of the physical risks but also of the effect of donation on the already close relational entanglement between the one asking and the one being asked. As the very question of donation and the considerations that come with it may involve others with whom the one asking and the one being asked are entangled, the question of donation requires efforts to mitigate anticipated disruptions of established entanglements. Hence, it was—again—entanglements that preceded, rather than resulted from, donation that required management.71

Resolutions? Unexpected entanglements and disentanglements

I was told that “Yes, you could very well be a candidate [for UTx-IVF], but you do need to find… to have a donor”. So the clock was ticking for me. Really. It was very stressful. We had kind of explored all possibilities.

Like Bella, in the account above, several of the interviewees expressed that a failure to find a donor had been, or would be, stressful. Some of those who had been actively looking for a donor had continued to search after failing to find one among their closest relatives. They frequently mentioned that they had hoped that there was a register for potential donors, or at least a way in which women prepared to donate could express their interest.

Since UTx-IVF still only is performed as part of research in Sweden, structures available for other kinds of organ donation, such as donor registries, have not been established. At the same time, the fact that UTx-IVF was only performed as research might have allowed for flexibility with respect to the requirements. Bella, for example, who even had looked into the possibility of placing an advertisement in the newspaper in order to find a donor, was eventually approached by an acquaintance who volunteered to investigate the possibility of becoming her donor. Also Mira, who had been quite confident that one of her family members could become a donor, later found out that none of them would be accepted as donors for medical reasons. When Mira had been informed of this, she mentioned it to an older friend who immediately said that she was willing to investigate if she could become Mira’s donor. Mira recalled her friend emphasising:

“And if it turns out that we match then, then I would like to donate”.

L: Oh, what did you think about that?

Mira: *Eee… what did I think…*

L: Or felt?

Mira: It, it… I think it was more like… “Really, do you know what you are getting yourself into?” Eee… And this… it is not… it is really not… it is really not just… it not a tiny thing, you know. Its… you’re not just giving some blood…but it is… you’re really taking something out from your body. But she’s been… all this time she’s been very aware of what it is that she has done. And, you know, have been reading up on everything. […] That’s what she said. “So I want to do this”. And that’s been quite nice for me, because I’ve never asked her. While mom…with her it’s been more…taken for granted that she would donate. […] Well she’s…she’s *a fairy godmother really*. Because if she hadn’t volunteered, I don’t know where I would have found someone.

Bella’s and Mira’s stories demonstrate how access to transplantation, when it was required that one brings one’s own donor, became to some extent a matter of chance, but it still depended also on established relationships in which one felt comfortable enough to share one’s story. Both of them had happened to share their story with the right person at the right time, and their search for a donor thus resulted in unexpected entanglements involving a donor who was not a relative and for whom donation was not taken for granted. Mira’s story further demonstrated that in some cases it might be preferable to have another donor than your own mother. While there may very well be strong medical reasons for having your mother as a donor, on a relational level it may feel easier to be offered a uterus from someone who is not ‘taken for granted’ as a donor. Then, Mira indicated, you can feel more certain that it is something that the donor has considered carefully. By this, I do not suggest that a mother’s decision to donate a uterus to her daughter is never carefully thought through. Mira’s example, however, shows that being offered a uterus by someone not so close demonstrates that the obviousness of mother-to-daughter donation is not always easy. Hence, being offered a uterus from someone not as close may reduce the suspicion that the decision to donate had been a decision without reflection, rather than one that was well thought through.

For some of the interviewees, the quest for a uterus came to an end for one of several possible reasons: it was not possible to enter the research project at the time, they decided to pursue another route to parenthood, or because they failed to find a donor. Emma, who—as part of the first pattern—emphasised that she had always assumed that her mother would be able to donate, eventually discovered that her mother would not be accepted as a donor because of her previous medical history.

Emma: So we had to send them [the medical records] to them, just to check, basically. And we said that we do understand what this means, we can read it ourselves. But they confirmed it quite quickly. That it wouldn’t work. If you don’t have someone else who could consider donating. But…we haven’t, at the moment. So it ended pretty quickly too. At the same time as it was a bit drawn out.

To find out that she could not have a donation from her mother was ‘as tough as hell’, Emma said, especially because her partner and she felt ‘that our premises were really good’. They thought, Emma said, that ‘this will work out fine, for sure, because we’re young and fertile and my mom is in good shape’.

So it felt like: “We’ll fix this!”, perhaps. Or yes. But then I got really sad, when we found out. Or I’m still really sad, but now it’s like another phase, in a way. Back then, it was more the initial shock.

Emma’s account describes the difficulty she had when she found out that the person she had taken for granted to become a donor would not be accepted. The realisation that transplantation was not an option, at least not at that time, took Emma back to square one and the feelings she had had as a teenager when she found out about her condition. She started therapy to try to deal with her experiences and once again figure out how to live without a uterus. While Emma did not describe the result of the failure to access transplantation as a disentanglement of her and her mother’s relationship, it did indeed disrupt an expected life trajectory and thus had an impact on her everyday life. The sorrow that she described suggests that support is needed to undergo the process of transplantation, and to manage the disruption to one’s expected trajectory that can occur when one is not accepted for transplantation.

The resolutions that the third pattern highlighted did not necessarily involve transplantation and the birth of a child. Instead, the third pattern involved descriptions of different resolutions to the interviewees’ quest for a uterus donor. Bella’s and Mira’s stories told that when they had exhausted all alternatives to find a donor among closest family and friends, the search became a matter of whom they felt they could, or happened to, share their story with. However, it should be kept in mind that several interviewees were, for different reasons, still seeking resolution. Some of them had decided to actively pursue other routes to parenthood; others were still considering whether to continue to pursue UTx-IVF. Previous research72–74 has described the efforts required to make sense of subjectivity, embodiment, and relations when ARTs (such as IVF) fail. For the interviewees in the present study, the realisation that UTx-IVF was not an alternative required, as Emma’s story demonstrated, negotiations with one’s disrupted life trajectory.

The third pattern, thus, illustrated support in different ways. On the one hand, in demonstrating how finding a donor might become a matter of chance, Bella’s and Mira’s accounts showed how support could appear unexpectedly when sharing one’s story. It also showed how this support, in their cases, ultimately resolved their search for a donor. On the other hand, Emma’s account detailed the need for support not to find a donor but to deal with the realisation that there was no donor to be found. Hence, Emma’s account underscored the need for healthcare to offer support and care also for those who are not accepted for transplantation, who have not found resolution and when the lack of resolution brings struggles and pain from the time of diagnosis to life.