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“Welcome to the Waiting Room.”
Our waiting room is full, shared by people with many different stories. Their eyes focus on anything but those seated around them and many look serious, uncomfortable, and anxious. As fertility counselors, we often hear from patients what a lonely place the waiting room can be; rarely will they reach out to one another. However, we know that if they are recipients of anonymous donor gametes they share the common loss and pain of not being able to conceive a child genetically connected to them: the woman who is “aging out” of being able to use her own eggs; the man who is shocked to learn that he has no sperm; the single woman who finds she must now use both a sperm donor and an egg donor; and the same-sex couple who are using donor gametes to create their family – all of them can be found in the waiting room. Wishing to feel hopeful, they may sometimes also feel confused, worried, perhaps ashamed, and possibly alone. As you read through this chapter you will learn more about them and the role played by the fertility counselor in their journeys as anonymous donor gamete recipients.
In this chapter, we will take you into the waiting room, presenting the psychosocial aspects of family building using anonymous egg donation, sperm donation and embryo creation, and the clinical issues that arise. The role of the fertility counselor providing preparation, support, education and evaluation as an integral member of the reproductive treatment team will be explored. This will include how to prepare for and conduct the recipient interview, helping patients to identify issues unique to their situation, including decision-making, informed consent, donor selection and disclosure. We will use vignettes to illustrate these stories related to the use of donor gametes, and will share reflections on our experiences of counseling recipients of donor gametes.
Introduction
The use of donated oocytes (OD) has become an option for family building since the 1980s, with the first egg donor pregnancy occurring in Australia in 1984 [1]. Though initially used for women with Primary Ovarian Insufficiency (POI), egg donation is now used successfully to treat a wide range of conditions including women who have survived cancer, experienced multiple pregnancy losses, carry genetic diseases and have poor egg quality due to advanced maternal age. Donation prior to this time had been centered on insemination with donated sperm for severe male factor infertility, which for over 100 years was the only option. However, with the advent of ICSI (intracytoplasmic sperm injection) in 1990, men with even extremely low sperm counts are able to father a child through the use of even one healthy sperm. Since the sperm may need to be obtained surgically or still result in unhealthy embryos, recipient couples also need to be prepared, through counseling, for the possibility of using donor sperm as “back up.” Furthermore, reproductive technology now also allows for the use of not only donated eggs, but both donated eggs and donor sperm chosen before treatment, referred to here as embryo creation (EC). (EC differs from embryo donation, where embryos previously created during infertility treatment, cryopreserved, and no longer needed, are donated by one individual/couple to another, which will not be addressed in this chapter.) This broadens the ability to conceive a child not only genetically unrelated to one parent, but to neither.
There is almost universal consensus by professional organizations and legislative bodies worldwide that counseling for patients considering third party reproduction (i.e., recipients of donated gametes or surrogacy) is important. The first country to establish oversight of assisted reproductive technologies was the United Kingdom in 1990 with The Human Fertilisation and Embryology Act [2], which required that counseling be offered to all potential donor gamete recipients for psychoeducational, but not evaluative, purposes. The HFE Act was amended in 2004 and 2008 to require that donor identity be made available to donor-conceived offspring. Some Australian states have followed with mandated fertility counseling for all gamete recipients as well as donors, and both Victoria and Western Australia have legislated the right of donor-conceived offspring to learn the identity of their donors [3]. In addition, the Mental Health Professional Group (MHPG) in collaboration with the Practice Committee of the American Society of Reproductive Medicine (ASRM) [4] and the Psychological Special Interest Group of the European Society of Human Reproduction and Embryology (PSIG/ESHRE) have developed guidelines for psychological counseling for all parties involved in sperm and oocyte donation [5].
While there is strong international consensus on the importance of counseling in third party reproduction, there is diverse opinion about allowing anonymity in gamete donation. In Australia, the Netherlands and the UK, for example, a donor must provide identifying information, and a child in the UK can find their donor in a national registry. However, in both Spain and the USA anonymous donation is allowed, though channels for getting information for reasons of medical urgency do exist. There are those who believe strongly that it is in the best interests of the child and family that the donor’s identity be accessible. However, the discussion continues and evokes strong feelings on the part of donors who feel that their identity should be protected, as well as recipients who prefer to keep these matters private. In Spain, for example, where the importance of the traditional family remains strong and where outsider knowledge of donor conception is perceived as potentially stigmatizing, there is an argument for maintaining anonymity in gamete donation. Therefore, it is unlikely that in countries like Spain or the USA anonymity will disappear anytime in the near future [6], which necessitates a chapter such as this.
Psychosocial impact
Receiving the diagnosis that egg donation, sperm donation or both are needed in order to conceive is distressing for anyone to experience. A range of feelings, including loss, sadness, anger, shame and betrayal may create a deep sense of grief over the inability to have a genetically linked child.
Donor egg
The use of an egg donor is rarely a first choice, and there may be gender differences in how men and women react to this information. For women, being told that their eggs are “too old” may be devastating. They may feel defective or damaged, their very sense of being a woman threatened, including feeling “less than” female. Women may worry about attachment to a baby conceived through the use of an anonymous woman’s eggs. Men may experience the loss equally, and feel helpless in easing their partner’s pain. Men will have the genetic connection to a child and may be pleased that one parent will still be genetically related, but feel guilty at the same time. For women, the ability to be biologically (if not genetically) attached to their baby through pregnancy, the strong desire to nurture the unborn child and the ability to have their baby be genetically connected to their male partner, are all strong motivating factors in a woman’s/couple’s ultimate decision to pursue egg donation [7].
Sue, 40, and Adam, 42, have been married for three years. Sue has been pursuing an academic career and could not take time off for marriage and a baby until achieving tenure. Now, they are ready to have a family but have had no success trying on their own. Adam has a busy technical career and also felt waiting was the right thing. However, they are both beginning to doubt the wisdom of their choices. Sue wonders why she was uninformed about age and fertility and is blaming herself and “society” for putting women in a bind between career and parenthood. Learning that egg donation is an option, Sue is initially uninterested, still reeling from shock and grief. Adam, although distraught at first, quickly accepts egg donation as a practical and viable solution. Sue wonders how he can possibly give up the thought of their genetic child and feels angry that he does not seem to be as distressed as she is. Sue and Adam agree that they need time to learn more about the process and the long-term implications.
The fertility counselor often meets with donor egg recipients at different points in the egg donation process. Early on in this case, Sue needs the chance to express her feelings of loss. Labeling this as a grieving process can give her the chance to normalize the emotions she has and give her time to process all that has happened to her dreams. Adam, accomplishing this process more quickly, may also have the same deep feelings Sue has, but wants to move to a solution to make it better for her. One partner may focus on positive statistics and financial options, while the other is slower to embrace this path. Normalizing that it takes time for acceptance and that the process itself is lengthy can give them permission to move forward at their own pace.
Donor sperm
For men, getting the news that they are azoospermic can be an enormous shock, particularly if there is no clear cause and no known family history of male factor infertility. For men raised in families/cultures where masculinity is especially prized, it may feel particularly embarrassing or humiliating to not be able to “get their wives pregnant.” Men may feel less masculine, as they may associate fertility with virility. Research has shown that men’s attitudes towards the use of donor sperm are more negative than towards the use of donor eggs [8]. They may also grieve the end of their “family line” if they are the only male child in their family of origin. They may fear rejection of their child by the family as well as rejection of themselves by the child. Unlike women using a donor egg, who can still be connected to their baby through pregnancy, men using donor sperm lose a vital connection to the potential child and may wonder how they will feel a sense of attachment.
George, age 29, and Cindy, age 27, have been married for three years, and been trying to conceive for the past year. Surprised that she wasn’t getting pregnant despite being relatively young, Cindy thought it was time that the couple consult a fertility specialist. They were shocked to learn that while Cindy’s testing was normal, George had no sperm. The couple was unfamiliar with male factor infertility and felt surprised, because there was no apparent cause. The diagnosis and lack of treatment options left George with feelings of confusion, sadness, anger and guilt. He began pulling away emotionally from Cindy, though he worried that she might reject him for being “the problem” and might want to look for a fertile partner. He was ashamed at having this “defect” which made him feel like less of a man. Coming from many generations of sons, he felt like a failure at being “the end of the line,” and wondered if his family could ever accept a child conceived with donor sperm as being truly “theirs.” He also wondered how he could bond with a child that was not genetically his. For her part, Cindy felt confused, sad, and, silently, angry at George for their situation, though rationally she knew he was not to blame.
As a fertility counselor working with this couple, it is important to give both George and Cindy the time and space to identify and grieve the many losses that accompany this diagnosis. Additionally, the counselor can help them to see that though the medical problem lies with George, this really is an issue shared by the couple. Going beyond shame and blame to the commonality of their feelings can help them move towards acceptance of the situation, and assessment of whether the use of donor sperm is a viable option for them.
Embryo creation (EC)
When faced with the need for both donor egg and sperm, recipients may choose this option because of the ability to select each of the donors, experience a pregnancy and have some control over the process. While some recipients may question the idea of creating embryos when children needing adoptive families already exist, others prefer to take charge and create a child of their own by selecting each of the donors. The idea of creating a child not genetically connected to either parent may raise spiritual, ethical and social concerns that will need to be addressed in counseling. In addition, a child created from two donors may potentially feel a sense of genetic bewilderment, with no genetic link to a parent. The fertility counselor can be helpful in guiding recipients to understand these issues.
Heather, a 42-year-old single woman, has been attempting unsuccessfully to become pregnant through the use of donor sperm for the past two years. It appears that due to her advancing age, her best chance for a pregnancy now would be to create embryos through the use of donor eggs and donor sperm. While she feels that she had successfully grieved the loss of being able to have a baby with a partner/father for her child, the idea now of giving up the ability to be the genetic mother is much more challenging for her. She worries about how a child will feel about having been created in this way, (i.e., in effect, “related to no one”) and what characteristics she would use to select each of the donors. She also wonders how she would tell the child about its donor origins, since the decision to use an egg donor is such an emotional one for her. Heather herself was adopted as an infant and says that this will enable her to have more empathy for the child, whose situation will be “sort of the flip” of hers – related not genetically but biologically. She wants the experience of pregnancy, yet she feels it would have been “healing” in some way to be able to see another person who might look like her.
The fertility counselor can empathize with Heather’s need to give birth and experience a biological connection with another human being as well as being in a unique position to understand how the child might feel, being unrelated genetically to his/her parent. The fertility counselor has an opportunity to prepare future parents like Heather by helping her to process her background and how it relates to parenting a child created in this way. As Heather feels more confident in her role as a mother, she will in turn transmit these feelings of comfort, security and acceptance to her child about his/her means of creation.
Same-sex recipients
Gay and lesbian couples come for treatment knowing that they will need to use a sperm/egg donor to have a child and face different issues than heterosexual couples. For gay male couples using an egg donor (and gestational carrier), a first step may be to become more familiar with the female reproductive system in the context of fertility treatment. Gay couples will need to decide whose sperm will be used, and whether they will be looking for characteristics in an egg donor that will somehow replicate the appearance, talents, and so on of the non-genetic father. Lesbian couples using a sperm donor will need to make corresponding decisions as well. When same-sex couples use an anonymous donor, many are also concerned about having access to donor information to share with their child in the future. Many sperm banks offer an “open identity” donor, which enables couples to select a donor willing to make himself known/available to a potential child upon reaching the age of 18, if the child initiates contact. Lesbian couples may sometimes find this a favorable option as a means of leaving the door open for their child to obtain more information or even perhaps a relationship with the donor, as they may not otherwise have a “father figure” in their lives. In addition, some egg donor agencies have various layers of openness with donor information and access. For gay couples, the chance to be able to provide more information about a donor to a potential child can also be desirable and a consideration in donor selection. (For more information on counseling same-sex couples, please refer to Chapter 13.)
Kevin and Mario have been together for five years and recently married. Prior to their marriage both had discussed the desire for children together, as Kevin has a son, 12, from a previous relationship who will be living with them. Mario is getting adjusted to the idea of day-to-day parenting as well as feeling stressed about all that needs to be managed in the process of finding an egg donor and gestational carrier. They are working with a supportive agency but the logistics and finances are daunting. Because Kevin already has a child, he wants Mario to be the genetic father and to choose the egg donor. Mario is looking for an egg donor who shares Kevin’s traits and hopes a child will look like Kevin’s son. Mario spends considerable time reading donor profiles without seeing a match. He begins to worry that he will never find “the one.”
Kevin and Mario are experiencing several life changes. Many donor recipients find themselves starting treatment during times of transition and often one member of a couple will “take charge” of the fertility process. This can sometimes become overwhelming, leading to stress and “getting stuck” in the process. Mario may feel there is an ideal donor for them and is growing frustrated and worried when that perfect candidate has not emerged. The fertility counselor can help them understand the emotional as well as practical issues that arise with donor selection and talk through their options. Couples may benefit from working as a team to review candidates as well as to make a final choice. Mario may be relieved that he will not have to carry all of the responsibility in making decisions that will affect both of them, as well as their future child. Further acknowledgment of their changes and adjustments may also relieve stress and help them have realistic expectations of themselves and the process.
Making the decision to use a donor
The decision to use a donor(s) can be complex and involve emotional, physical and practical considerations uniquely configured for each recipient. Understanding what is involved in this decision can help recipients feel more engaged and able to appreciate what they can still experience or control in a positive way, as what they have lost is usually readily apparent. For many, the goal of becoming parents can still be achieved. One parent may have a genetic connection to the child or be able to participate in the selection of both donors as in EC. The often longed for experience of pregnancy, physically and socially, can be a reality. When age is a factor, using a donor can reduce the genetic risks associated with age or relieve anxiety over concerns about their own genetic history. Yet by selecting donor characteristics that are similar to the recipient’s own, a child may still look as if they “fit in” a family, alleviating fears that others would see a child as “not like” the parents. If recipients have already gone through fertility treatment they may feel comfortable or at least familiar with being a fertility patient. They may continue to take advantage of fertility treatment insurance benefits or financial programs such as “shared risk” options, to help manage treatment costs. Sharing donors increases the possibility of other “genetically related” children and opens the idea of using a registry established for donor siblings. Adoption, while an acceptable option for many, involves learning the complexities of a new system and requirements that may limit options due to age or situation. Using donation to build a family seems to help recipients feel more in control and the increased chances of success bring “new hope” to those who choose this path.
With time and the resolution of the grieving process, most recipients are able to adjust to the reality of their medical situation and grow to see egg and/or sperm donation as a good, albeit different way to form a family. They may strive to create a child who resembles them in some way. Most recipients will try to select their donors on the basis of a healthy, medical/genetic family history that is a good match with their own, as well as considering similarity in appearance, race/ethnicity, educational level and personality [9]. In reality, however, donor selection may well be dictated by available options rather than idealized characteristics.
Recipient counseling interview: purpose and process
The role of the counselor
Patients and those who provide medical care acknowledge the importance of emotional preparation before treatment through counseling. Research supports the idea that there is benefit not only at the time of treatment, but that it imparts a positive impact for the future of families created through egg donation, sperm donation and embryo creation [10].
There is debate among mental health professionals and fertility counseling organizations over the role of the fertility counselor, with some believing that the counselor’s role should be evaluative, while others see it more as a matter of preparing the recipients for treatment, providing education on donor-related issues, and offering support at the time of treatment and into the future. These two roles can conflict, if recipients view the counselor as a potential “gatekeeper” who is evaluating their suitability to be parents and whether or not they should be permitted to continue with treatment.
It is important that the counselor be clear with the recipients as to the scope of his/her role. When counseling is required as part of a clinic’s protocol, it is natural for recipients to experience some anxiety while wondering if they are being assessed or might possibly even be denied treatment. In the initial contact, the counselor should inform the recipients that the primary purpose of the interview is psychoeducational in nature, that is to consider the implications of donor reproductive assistance as well as to give information and resources. The counselor will ask about the infertility history of the recipients, how they made the decision to proceed with donor gametes, provide information, explore current thinking about major issues and how to handle these issues with others, as well as a future child. However, if the counseling is evaluating the patient’s appropriateness for treatment, this should be clearly stated before the consultation begins.
Studies have shown that most infertile people are emotionally healthy and not significantly different than others [11]. Thus, the expectation should be that these are healthy individuals trying to cope with an abnormal, highly stressful event in their lives, and attempting to make the best possible decisions in dealing with it [12]. However, circumstances may come to light that indicate significant issues that need to be addressed before treatment is recommended. There may be significant disagreement about the desire to have a child, have a child through donor procedures, or about the impact of this decision on future family functioning. One partner may feel pressured or resistant to moving forward. Recipients may also exhibit significant relationship problems or find themselves at odds over life goals and financial choices. Communication may have become strained. Instead of being on their “best behavior” as is usually seen, patients may “fight” in front of the counselor, possibly as a way of expressing their distress. Untreated or unacknowledged mental health problems may impair their ability to complete treatment, make decisions, or give consent. There may be emotional ramifications if changes in medication are needed due to pregnancy. Drug or alcohol abuse issues may surface and need to be addressed. Recipients may be reluctant to acknowledge their unique needs as a family created through donation. For example, they may be noncompliant with future children’s rights to information where legally mandated. Recipients may also have consistent and unusual difficulty in selecting a donor(s), unrelated to donor candidate options and availability. It is expected that donor selection may be stressful and time-consuming for many. However there are instances when no donor characteristics meet recipient expectations. This reluctance to choose a donor may indicate issues that once identified can be resolved.
The role of the fertility counselor is to bring the concern to the attention of the medical team and work together with the recipients to find solutions. This might include making recommendations for referral for treatment, such as marital counseling, drug/alcohol treatment or evaluation for psychiatric care/medication. The counselor may also recommend to the medical team that treatment be deferred until the issue(s) are resolved.
Melinda, age 42, and Pauline, age 50, a same-sex couple together for many years, met with their fertility counselor for their required recipient counseling session prior to proceeding with the use of donor egg and donor sperm. They had already attempted unsuccessfully several IUI cycles with Melinda having been inseminated with donor sperm. Due to Melinda’s apparent low ovarian reserve, the doctor was now recommending IVF with donor egg and sperm. Though sad about giving up the use of her own eggs, Melinda felt ready to move along to a treatment that she hoped would finally result in a baby. However, in the session, much to Melinda’s surprise, Pauline stated that she really did not think she could “love a baby that was not related to Melinda,” that is not created through the use of her eggs. Melinda replied that she really “didn’t know what that would mean in terms of their relationship.” The counselor recommended that they defer treatment rather than make any rash decisions.
Several months later the couple returned for a follow-up session. Pauline stated that though she had been a bit upset with the counselor at the time for recommending that they put things on hold, she now realized that this had been a good decision. She had researched egg donation, and now felt that a baby “would be Melinda’s since it would grow in her.” Counseling had helped them to recommit to each other and recognize their desire to have a baby together.
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