The clinical literature notes that pregnancy has become an expected benefit of solid organ transplant. Establishing “best practices” in the management of this particular transplant population requires careful consideration of the ethical dimensions, broadly speaking, of posttransplant pregnancies and these women’s lived experiences. In this article, we present the current clinical and social science posttransplant pregnancy research. We specifically address the psychosocial and ethical issues surrounding preconception counseling and posttransplant health quality of life and mothering and suggest areas for future research.
Highlights
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We consider several core ethical dimensions of posttransplant pregnancies.
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We present the current clinical and social science posttransplant pregnancy research.
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We address the psychosocial and ethical issues surrounding preconception counseling.
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We address the psychosocial and ethical issues of posttransplant health quality of life regarding pregnancy and mothering.
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We suggest areas for future research.
Introduction
The clinical literature notes that pregnancy has become an expected benefit of solid organ transplant . This expectation is inculcated in an ever-growing number of women, given the growing number of recipients of reproductive age and the increasing numbers of recipients who will eventually reach reproductive age . The expectation that transplantation can, or perhaps ought to, generate reproductive opportunities is inherent in the pursuit of uterine transplants. Yet the very idea that pregnancy could be considered an “expected” benefit of transplant is itself novel and a reversal of the earlier perspective that posttransplant pregnancies posed too many threats to the health of the mother, the child, and the graft organ .
However, several decades of clinical experience with posttransplant pregnancy have largely overturned the previous stance. e
e A 2006 study of US transplant centers found 15.3% of responding clinicians recommended organ recipients to avoid pregnancy completely. The remainder recommended recipients avoid pregnancy for some duration prior to or following transplant .
These data come from smaller clinical studies from several countries as well as from large registries such as US pregnancy-related data in the National Transplant Pregnancy Registry (NTPR) and the UK Transplant Pregnancy Registry. For example, recent clinical literature often refers to the “successful” outcomes of posttransplant pregnancies in fertile women with various end-stage organ diseases . Based on data from the NTPR, approximately 70% of all posttransplant pregnancies result in successful live birth, although lung recipients appear to have the greatest risks of poorer pregnancy outcomes . These data come mostly from kidney transplants, followed by liver and heart. Not only do most of these pregnancies not significantly alter graft function but also by the measure of live births, these pregnancies are comparable to population-wide statistics and qualify as successful.Given the personal and social centrality that reproduction plays in women’s lives, the older practice of actively discouraging female transplant patients from pursuing pregnancy on the basis of inadequate or unexamined evidence was clearly ethically fraught, although medically sound – given that no animal experiment could be preliminarily undertaken, prudence was mandatory. The transplant profession’s new openness to, and clinical support for, a wider range of reproductive choices for female recipients is laudable. However, establishing “best practice” in the management of this particular transplant population requires careful consideration of the ethical dimensions of posttransplant pregnancies. It also requires careful consideration of the psychosocial dimensions of posttransplant pregnancies. Increasingly, bioethicists are acknowledging sociological theories, epistemologies, and methodologies as vital to appreciating the complexities of lived moral experience, asking a broader range of ethical questions, understanding “ethics” as socially and culturally situated, and ensuring their own critical reflexivity vis-a-vis bioethics’ projects, positions, and partnerships .
In this article, we bring the sociological literature to bear on the ethical questions of posttransplant pregnancies in order to cultivate a more robust picture of the experience of posttransplant pregnancy, the social forces that inform those experiences, and the moral dilemmas inherent in those experiences. We outline the current posttransplant pregnancy research and suggest areas of future research. We begin with a discussion of prepregnancy counseling, and then detail issues surrounding post-pregnancy quality of life and posttransplant mothering. Ultimately, we hope to cultivate an expansive understanding of the ethical dimensions of “best practice” in the area of posttransplant pregnancies. The “success” of posttransplant pregnancy should not be allowed to overshadow the real risks entailed by these pregnancies, the many unanswered questions about this endeavor, and the contingent health and fluctuating quality of life experienced by transplant recipients who, by the auspices of transplant medicine, have now become parents.
Clinical risks for posttransplant pregnancy
End-stage organ failure regularly produces infertility in reproductive-aged women , yet fertility often (although not always ) returns post transplant. However, gestation after transplantation should be labeled “high risk” due to associations with obstetrical complications. As outlined in a growing body of literature, the risks vary according to the type of organ transplanted, the original disease or disease process, the time between transplant and conception, the immunosuppressant drug regimen followed, and the recipient’s current health status .
In general, posttransplant pregnancies are at an increased risk of renal insufficiency , hypertension and preeclampsia, delivery by cesarean section, infections , preterm birth, low birth weight or small for gestational age babies , miscarriages, proteinuria, intrauterine growth retardation, and exacerbation of the underlying illness during pregnancy . Furthermore, post transplant, pregnant patients call for greater volumes of immunosuppressant drugs to avoid rejection of the graft organ .
Clinical risks for posttransplant pregnancy
End-stage organ failure regularly produces infertility in reproductive-aged women , yet fertility often (although not always ) returns post transplant. However, gestation after transplantation should be labeled “high risk” due to associations with obstetrical complications. As outlined in a growing body of literature, the risks vary according to the type of organ transplanted, the original disease or disease process, the time between transplant and conception, the immunosuppressant drug regimen followed, and the recipient’s current health status .
In general, posttransplant pregnancies are at an increased risk of renal insufficiency , hypertension and preeclampsia, delivery by cesarean section, infections , preterm birth, low birth weight or small for gestational age babies , miscarriages, proteinuria, intrauterine growth retardation, and exacerbation of the underlying illness during pregnancy . Furthermore, post transplant, pregnant patients call for greater volumes of immunosuppressant drugs to avoid rejection of the graft organ .
Pregnancy counseling and monitoring: ethical considerations
With organs in short supply, a central ethical dilemma arises around whether women should put their graft organ at risk through the pursuit of pregnancy. The cost of losing a graft organ is not borne solely by the pregnant woman. Her need to be retransplanted places increased strain on an already scarce resource and adds costs to an already overburdened health system. Given a concern for social justice, should “voluntary risk-taking” be assigned a lower priority for retransplantation? Such ethical debates, while interesting, reduce the complex, multifactorial nature of graft rejection to a simple causal relationship with pregnancy . Furthermore, they assume that all pregnancies are deliberative choices, enacted by women who enjoy full access to contraceptive knowledge and technologies, women unencumbered by the influence and authority of spouses, families, and larger social structures. Moreover, a focus on pregnancy, and not other “risky” health behaviors, could qualify as a form of discrimination. Last, the current standard is that the medical establishment should not have purview over the surveillance of individual health choices.
Such debates, as Davison explains, are also entwined in current, and ongoing, arguments about how best to view the “right” to parenthood: as a positive right conjoined with an expectation of social support for reproduction, or as a negative right, a prerogative not to be prevented, but one held without financial assistance and without being able to excessively burden the health-care system with one’s reproductive choices . These arguments also extend into other realms, such as the use of fertility treatments, and have yet to reach any consensus on definitive conclusions or solutions. Whether or not transplant confers a positive “right” to parenthood and the social supports inherent in such a right, it is clear that transplantation regularly confers an ability to become pregnant. Such an ability may or may not confer “rights” for patients, but surely it carries responsibilities for the transplant professionals who have bequeathed this ability and for the obstetric community who have the knowledge, training, and experience to ensure its most optimal outcomes.
Preconception counseling
The basic principles of beneficence and non-maleficence inherent to the medical profession, understandably, may make many medical providers reluctant to actively intervene to facilitate conception in situations in which pregnancy may exacerbate a transplant recipient’s underlying medical condition and place the transplant recipient and their potential offspring at risk. This stance, at least in the field of transplantation, would appear to be changing – perhaps a factor of increasing recognition of patient autonomy, perhaps due to a more robust sense of being able to successfully manage transplant pregnancies through increased data and experience.
Facilitating and encouraging pregnancy in situations of imperiled health has elicited some ethical commentary . “Historically,” Davison notes, “some physicians have counseled women not to become pregnant when they have a life expectancy that is shortened or have a chronic illness that impinges on their ability to rear children because of concern for the welfare of the potential child.” More existentially, Ross notes that no parent is guaranteed to remain healthy or live to rear a child to adulthood . Davison notes that to counsel the chronically ill not to conceive out of concern for the welfare of the child is tantamount to claiming that nonexistence is preferable to having a parent that is ill or that dies prematurely . Such debates on the welfare of the child have also surrounded the issue of egg transplantation in older women , yet no consensus or regulations exist on this matter. Nevertheless, some commentators advise counseling transplant recipients to protect the welfare of their children by having a care plan in place in the event of their death or incapacitation, a precaution that would no doubt serve all parents well .
While the social, psychological, and experiential benefits of biological parenthood are generally seen to outweigh the health risks produced by posttransplant pregnancy, a candid discussion about the potential risks and complications associated with pregnancy will help the transplant recipient make a better informed decision on whether to pursue pregnancy. Guiding women who have successfully received a transplanted organ in their decision on whether they should or should not become pregnant is complicated, controversial, and challenging both medically and ethically. Medical and ethical considerations are different depending on whether the transplant recipient is seeking preconception counseling, infertility services to become pregnant, or had a spontaneous conception and is presenting to her obstetrician for prenatal care. In addition, the medical and ethical considerations are impacted by the recipient’s medical condition, life expectancy, ovarian reserve, marital status, financial resources, and willingness to consider contingency plans for raising a child in the event the transplant recipient dies. This is further complicated by the fact that most transplant recipients will be neither so sick nor so healthy that it is clear what advice they should be given regarding pregnancy. Because of chronic medical conditions, immunosuppressive therapy, and risk of graft rejection, many transplant recipients will fall into a category in which pregnancy is not absolutely contraindicated, but a relative contraindication and a reasonable option.
Respecting the autonomy of transplant recipients, possessing a compassionate understanding of how strong the desire to become pregnant may be, and informing the patient of the risks associated with pregnancy are essential for providing guidance pertaining to pregnancy. The crux of this medical and ethical dilemma is the balancing of the interest of the patient’s autonomy for reproductive freedom with that of not harming the patient and potential offspring by facilitating pregnancy. The various bioethical issues of risks, benefits, and consequences to the individual and society are qualitatively, yet not quantitatively, different, meaning that when one also factors individual women’s health differences into account, it is difficult to standardize these various ethical issues into a set hierarchy where some issues take precedence over others in all posttransplant pregnancy cases.
Furthermore, clinicians should ensure that transplant recipients are psychologically ready for pregnancy. Numerous studies have implicated acceptance of the graft to a higher quality of life, yet even if graft functionality occurs, the failure to incorporate a new organ as part of self is serious if recipients fail to psychologically conceptualize the new organ and posttransplant regime into daily life. Thus, this may require more than the medically recommended 2 years post transplant before pregnancy in order to ensure that the woman is ready to incorporate new health behaviors into her daily routine when pregnant. For example, nonacceptance of the graft has been associated with psychological distress and noncompliance with the medical protocol. The narratives of heart recipients reveal that those who focused on the organ as an extension of the donor experienced increased mental distress, sporadic immunosuppression compliance, alcohol use, and weight gain. In other countries, failure to identify with a new organ has been related to suicide .
Although gaps and questions remain, preconception counseling is emerging as an important component of best practice for the management of posttransplant pregnancies, perhaps especially as many patients increasingly come to expect pregnancy as a benefit of transplant. We recommend interdisciplinary teams for the preconception counseling of transplant recipients. For many obstetricians and infertility specialists, transplant recipients are far from the mainstay of their practice and they may not know how to properly advise these patients on becoming pregnant. A referral to a maternal fetal medicine specialist is recommended as part of preconception counseling. Medical providers providing conception advice to transplant recipients should also seek an opinion from the transplant surgeon as to whether it would be safe for the patient to pursue pregnancy. It is easier to advise patients not to become pregnant when their transplant surgeon provides an opinion that pregnancy is absolutely contraindicated because of their underlying medical condition. It becomes less clear on how to advise patients when their medical condition improves following transplant surgery as is frequently the case.
Moreover, central to preconception counseling is advice and education around contraception. The NTPR recommends that recipients wait 18 months to 2 years post transplant prior to conceiving; hence, contraceptive counseling will be requisite for all women of reproductive age. Moreover, given that many standard methods of contraception are contraindicated in the transplant population , education around appropriate methods is needed. The American Society of Transplant Physicians recommends counseling on contraception as early as the transplant evaluation . Yet transplant programs will also have to be cognizant of the need for contraceptive education for their pediatric transplant populations as they advance to reproductive age.
Preconception discussions of pregnancy should be expansive, covering not only the risks of pregnancy but also the options to pregnancy. Presenting alternatives to biological parenthood makes the recipient’s choice to pursue pregnancy truly informed . In a discussion of pregnancy in chronic kidney disease, Davison notes that women and their partners also need to be informed of options for pregnancy termination should unplanned pregnancy and/or associated risks of pregnancy be seen as too great . In addition to discussing risks, there are preconception measures that should be taken to reduce risks: immunizations, testing for infection, and potentially genetic counseling .
When conception does not occur, infertility becomes part of the requisite counseling. Fertility treatments in transplant recipients are complex , with limited published experience of potential outcomes . Leyser-Whalen et al. point out the emotional distress associated with infertility . Attending to emotional distress may be especially pertinent in this population, for whom infertility may be yet another disappointment in a saga of health disappointments, or a particularly poignant reversal of their “expected” transplant benefits.
Pregnancy monitoring
If the allograft recipient chooses to become pregnant, she should be considered high risk, needing special care under the supervision of a team of obstetricians as well as various medical and nonmedical specialties. Continual surveillance is important; transplant recipients are seen every 2 weeks until 28–32 weeks, then weekly following the remainder of the pregnancy. The optimal pharmaceutical treatment for maximum fetal and maternal safety remains unclear. According to the NTPR, to date, no specific immune suppressive therapy long-term effects on the child have been identified, and while the initial fears of malformation and other gross harms have largely been discredited , there remain conflicting reports of fetal exposure and limited neurocognitive and immunologic follow-up . Thus, both the potential harmful effects of the immunosuppressive treatment on the fetus as well as the risk of stopping the immunosuppressive medication during pregnancy need to be considered. Because few data are available on the latest immunosuppressants, such agents are not recommended . Moreover, breastfeeding remains controversial because the risks of immunosuppressant medications while breastfeeding are unknown, yet recent reports appear to be in favor of breastfeeding . Furthermore, transplant recipients and their families frequently wonder about the risks of immunosuppressive therapy to their offspring.
Clinicians should also be sensitive to issues of stress and anxiety, which come from multiple sources in this population. The appellation of “successful pregnancy” to transplant pregnancies – however apt as a measure of live births – needs to be qualified. The irony of pregnancy and childbirth in many developed societies is that the technological advances that make reproduction a viable option for an ever-expanding pool of transplant recipients are incongruent with the prominent cultural narratives that celebrate childbirth as a natural phenomenon . For increasing numbers of women, birthing centers, doulas, drug-free gestation, intervention-free delivery, vaginal birth, and breastfeeding mark a “successful” pregnancy – one touted as providing the best possible beginnings for the child and one frequently said to empower mothers. Against this backdrop, transplant pregnancies – which inevitably involve intensive management, necessitate high volumes of toxic drugs, generate elevated numbers of preterm and caesarian deliveries, and often preclude breastfeeding – may feel strangely “unsuccessful” to recipients , even when the outcome is a much desired child.
The natural childbirth movement is not hegemonic; it finds allegiance in particular political, ideological, economic, ethnic, and religious contexts and not others. However, in places where it is influential, the movement for “natural” childbirth is a potent merger of scientific, moral, and political discourses; finding oneself outside such a framework can not only create stress but also inhibit a discussion of negative aspects of pregnancy where transplanted recipients silently cope with their own mortality and attempt to conform to a perfect pregnancy . Anxiety about their “unnatural” pregnancy may subsequently contribute to maternal discontinuation of immunosuppressant drug regimens f
f Postpartum depression has also been linked to the discontinuation of immunosuppressant medication .
. Transplant mothers persuaded by the natural childbirth literature must weigh the presumed harm to the unborn child against harm to the graft and hence their own ability to sustain the pregnancy or survive to parent the child; such a calculus is not in the scope of the natural childbirth movement. The reality is that transplant pregnancies are highly technological. This, at least for some women, will be one of the difficult emotional components of a transplant pregnancy.We suggest more research into transplant offspring to detect potential longer-term or more subtle health risks as well as more research into the impact of cumulative pregnancies on graft survival as this is not currently well documented . We also recommend the availability of counselors for transplanted pregnant women as they often experience anxiety, symptoms of posttraumatic stress, and perinatal depression . The counselor should also be sensitive to cultural context.
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