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George and Lilly Thomas were seen for a counseling session before their scheduled treatment with donor sperm. Mrs. Thomas had always felt they should disclose the donor conception but because her husband was uncomfortable with disclosure, she had deferred to him in this decision. After a more detailed discussion with the fertility counselor about his concerns, Mr. Thomas concluded that he understood his wife’s reasons for wanting to disclose but he thought it best to wait until the child was “old enough to understand,” perhaps at age 16 or older.
Introduction
The use of donor gametes in the medical treatment of infertility has a long history, beginning with the first recorded case of sperm donation in 1898. Historically advised to keep the sperm donation a secret, parents were isolated from social support and the opportunity to talk with others about the impact of using gamete donation to build a family. Professionals and parents alike believed donor insemination would become unimportant as the children grew up in what appeared to be conventional families. In the last 25 years, social science research, personal accounts by the adult donor-conceived and parents, openness associated with the expanded use of oocyte donation, along with professional discourse have led to the understanding that gamete donation is highly complex with long-term psychosocial implications for the donor-conceived family.
In recent years, we have seen a change in legal policy and clinical practice with increased openness in the United States (US) and throughout the developed world. A more open approach has occurred on two fronts: professional recommendations in support of disclosure of donor conception and the legislated removal of donor anonymity. The first country to remove donor anonymity was Sweden in 1985. Over the next 20 years, more countries enacted legislation allowing the donor-conceived access to the donor’s identity, including Switzerland (1992), Austria (2002), Norway (2003), New Zealand (2004) the Netherlands (2004), the UK (2005), Finland (2007) and several states in Australia [1]. The United Kingdom’s Human Embryology and Fertility Authority (HFEA), the British Infertility Counselling Association, the Swedish National Health and Medical Research Council, and the Australian National Health and Medical Research Council have explicitly recommended that disclosure is in the best interests of the donor-conceived. While donor anonymity is still the norm in the USA, there has been an increase in the number of sperm banks and egg donor agencies offering open-identity donors.
While debate continues about the relative importance of disclosure, the two largest assisted reproductive technology (ART) professional bodies, the European Society of Human Reproduction and Embryology (ESHRE) and the American Society for Reproductive Medicine (ASRM), agree that counseling is an essential component of parent preparation prior to donor procedures. Likewise, several key associations of fertility counselors in the USA, UK, Canada, Australia, New Zealand, and Germany recommend counseling about disclosure [2]. In 2004, The ASRM Ethics Committee issued a document, stating, “while ultimately the choice of recipient parents, disclosure to donor conceived persons of the use of donor gametes in their conception is encouraged” [3]. This statement reflects an emerging consensus among American professionals that openness in gamete donation is an important value and consideration, especially for the donor-conceived.
In this changing legal, social and professional context, research suggests that an increasing number of parents plan to disclose donor conception to their children and will seek counseling help with their decision [4]. In light of the increased need for counseling, this chapter will explore parents’ concerns about disclosure, counselor preparation of parents for disclosure, and recommendations for helping parents create the family disclosure story. In addition, the chapter will explore how children and young adults understand the role of the donor, the ongoing process of disclosure and its long-term implications. (Table 18.1 summarizes recommended practices in disclosure counseling.) The chapter will conclude with an examination of several complex cases of disclosure.
Recommended practices in counseling parents about disclosure.
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Parent preparation
Parents choose to disclose for a number of reasons, including prevention of inadvertent disclosure, personal beliefs about openness and honesty, key events in their personal history, and the belief their children have the right to know about their genetic heritage. Parents interested in disclosure seek information about “telling scripts,” the best age for disclosure and available resources. Helping parents discuss donor conception with their children requires preparation prior to the actual “story telling.” Information sharing, both the decision and process, is a significantly emotional experience in which parents feel a variety of uncertainties and anxieties. The fertility counselor can play an instrumental role in helping parents’ explore their fears, decrease their anxieties, articulate a plan and increase their confidence in disclosure.
Before discussing the “when and how” of disclosure, the counselor first needs to explore what disclosure means to the parents; how they see themselves as parents in light of donor gamete use; how they expect others, including their child, to react; and what they expect the outcome of disclosure will be [5]. Counseling parents about disclosure occurs within a cultural context where parenthood and family are defined by biogenetic relationships. This “blood tie” is seen in the larger culture, and often among the parents themselves, as a powerful and exclusive connection, in which there is room for only one “real parent.” Thus, cultural beliefs can create a primary fear in the non-genetic parent that they will not be a “real parent,” and ultimately that they will be rejected by their child.
The first critical counseling intervention is to help the parents explore and reframe the meaning of family. If “real families” and “real parents” are created by genetic relationships, then our job is to help disclosing families create a new family narrative. It is important then to think about the language they will use. The language used in all family narratives plays a significant role in defining relationships. Hence, we have a father, stepfather, mother, mother-in-law and so forth, each describing a unique relationship. Parents want to tell their child about donor conception without conveying that the non-genetic parent is not the “real father” or “real mother.” It is therefore important in the disclosure narratives that the person who provided the gametes be referred to as the donor, and not the other parent, the real parent, another Daddy, or the “Donor Dad or Donor Mom.” Other approaches can be problematic for children. One mother in her first telling of the story talked to her child about having “two daddies”. Realizing this had been distressing and confusing to her child, she used the word “donor” in her subsequent conversations [6, p. 1395]. Beyond the importance of language, the other key piece of the disclosure story is defining family as based on loving relationships, and parental intent, not genetics. Accordingly, the husband in a couple using DI becomes a father because he plays an active role in bringing his child into the world and committing himself to parenthood.
The second counseling intervention is to educate parents about the nature of bonding, family development and findings from current research. Some parents fear that using a donor will generate distance in their relationship with their child. Bonding is a complex two-way process that begins in utero with both mothers and fathers primed hormonally before birth to attach to infants. Because bonding, attachment and comfort with a new infant take time, some parents may fear that because they do not “instantly love” the infant, they are poor parents or that the “disconnect” derives from the lack of genetic connection. Despite these fears, research has consistently revealed long-lasting bonds in donor-conceived families, and that over time, parents are less worried about their relationship with their child, feel greater confidence in their parental roles and place less significance on the genetic difference [7,8]. Further, parents view their choice of donor conception as a positive one, the quality of parenting among those who have used donor gametes is as good as, if not higher, than those in natural conception families and the children in donor-conceived families thrive [9].
The third intervention is to explore the psychological meaning of the donor for the family. The fertility counselor will prepare parents to understand that as children grow they may ask questions about the donor. Parents often fear their child’s interest in the donor, believing that the curiosity represents a failure on their part or the child’s rejection. It is important to emphasize that the child’s curiosity about the donor suggests just the opposite. In fact, the questions are an indication of attachment, security and trust in the relationship with the parents, all of which allow them to raise the questions in the first place. While patients may not be interested in saving donor information in the pre-treatment phase, they or their children might find the information important in the future. Accordingly, fertility counselors should advise parents to save all the donor information they have, especially pictures, for a time when their child may want to know more about the donor.
Beginning the story
Starting with young children
Parents who plan to disclose have varying views about when to do this, including from “when it’s the right time,” when they believe their children can “understand,” or from an early age, before the school years. Some view disclosure to a young child as meaningless, since children in this stage of cognitive development do not understand the cultural or biological meaning of genetic heritage, or how reproduction occurs. However, the emphasis on the importance of cognitive understanding, offered as support for later disclosure, overlooks the significance of the affective and relational components of the story for both the child and the parents.
Fundamental to any family’s identity are stories of conception, birth, family history and stories of “how our family came to be.” It is through stories that family members understand themselves and their place in the family [7]. Thus, many parents in donor-conceived families begin sharing their family story when their children are between 2 and 5 years old and find that early telling has several advantages. First, the parents establish the foundation for ongoing discussion of their family’s creation, by introducing a vocabulary, and providing a reference point that the child and parent can return to as the child’s development continues [6]. Early telling allows parents to practice their “telling” skills and, for some, get over the first emotional hurdle, leaving them freer to engage in future conversations. The donor-conceived family story, like other family stories, becomes a normal part of life, one that the children have always known.
Effective “telling stories” used by parents share several features, which are noted in Table 18.2. Woven together, the parent’s explanation may sound like this: [6,10].
Components of the telling story.
Effective “telling stories” used by parents share several features. The most common components of the story include: 1. the parents’ inability to have a child on their own; 2. the need for help, from a donor and/or from a doctor; 3. the specialness of their child; 4. the parents’ joy when their child was born; and 5. this is how we became a family. |
“Mommy and Daddy wanted a baby for a long time. We found out we could not make one on our own. We went to a special doctor who helped us.”
“Babies are made from an egg from a Mommy and seed/cell/sperm from a Daddy. Mommy’s eggs couldn’t make a baby. We got help from this nice lady who gave us some of her eggs.” Or, “A kind man gave some of his sperm to help men like Daddy. This kind lady/man is called a donor.”
“The eggs and the sperm grew together inside Mommy, and now we have you, which made us the happiest parents in the world. This is how our special baby was born.”
Parents’ stories can differ in the language used to describe the building blocks of reproduction. Sperm are referred to as “sperm”, “seeds”, “tadpoles” or a “special ingredient”. Oocytes are most often referred to as “eggs” or sometimes “a special cell.” A baby grows in “a nest,” a “baby sac,” “mommy’s tummy” or “a uterus”. Analyzing the themes of parents’ disclosure stories, researchers have concluded that the stories serve several functions including normalizing donor conception, decreasing stigma, differentiating the donor from the parents, reinforcing the role of the parents, separating genetics from relationships in families and introducing a vocabulary [7,11].
There are many children’s books depicting different kinds of families, written to assist parents in sharing their family’s story. (See Addendum 18.1.) The books range from those for preschool age children with appealing colorful illustrations, to books for older children that can be read together or separately by the child. Parents often view children’s books as helpful tools, because the narrative is ready made, the stories can be easily shared and the narratives can encourage children to talk about their own story. Some parents make their own books for their children in which they add more detail to their story such as pictures of an embryo, sonogram images, history about the parents “falling in love,” photos of the pregnant parents and description of the parents’ feelings. However the story is shared with a young child, it becomes an anchor and a source of pleasure for parent and child. Many parents also read books about “different kinds of families,” in which the overarching message is “a family is people caring about each other.” Ideally, parents will leave these books where the child has easy access, allowing the child autonomy when s/he wants to read or look at the book.
And how do young children respond to the early stories and books? In general, young children will react with curiosity and ongoing interest in the story, “Tell me the story again about how I was born.” If parents do not bring up the topic or read books to their children, the children are more likely to seem disinterested. Although Mr. Thomas thought disclosure was about getting the facts right, it is more importantly about an evolving shared family experience. The best-assembled script will not lead to “getting the facts right” when the child is young. In the end, as s/he hears the family narrative, the child will first experience the closeness of the relationship with his/her parents and secondly process the facts according to his/her stage of development. This anecdote below, shared by a parent, illustrates how facts can become interwoven with both the child’s developmental (oedipal) stage and her attachment to and identification with her mother.
“I have shared our story with my 3-year-old daughter as a bedtime story…we were reading and she began to tell me that when she grew up, she would find a nice lady to give her some eggs, and that they would be mixed with daddy’s sperm, and then would be put in her belly to grow into a baby. She said that she wanted to have babies the same way that I had her.”
Parents report different reactions after their first conversations with their children. Some report they wished they had been able to talk to other parents first, some parents feel uncomfortable, others report that telling brought up emotional issues such as memories of their own infertility [6]. In light of these reports, fertility counselors are encouraged to direct patients to written accounts of other parents, and to refer them to online and face-to-face support groups where they can interact or just listen to other parents. (Refer to Addendum 18.1.) Despite the range of initial feelings, few parents express regret. Most report feeling good about sharing the information, reporting no negative effect on their child or the relationship with the child [6,12]. Some research found more positive parent–child relationships within disclosing families and that disclosing couples view themselves as more competent than their non-disclosing counterparts [13].
The school age years
Some parents choose to wait until latency age, when their children are between ages 7 and 11, to bring up their children’s donor conception. Beginning around age 7, children make significant advances in their cognitive and emotional capacities including an increased ability to connect old and new information and greater curiosity about the world around them. This noticeable change in their child’s developmental abilities can trigger parents to begin disclosure. As one parent noted, “And I look at [him] now, and I think he is a person in his own right. He has rational thought, and all of those things, and he has an absolute right to know” [14, p. 424]. Prior research has characterized some parents as “right timers” who believe there is a “right time” to tell and feel they will be able to identify when this is [6,7,11,14]. Parents who prefer the “right time” approach often anticipate disclosing when their children are between ages 10 and 12. Research has indicated that some “right timers” end up disclosing when their children are between the ages of 6 and 7 years [11,15]. Other “right time” parents perceive the disclosure story as one shared when the children “are old enough to understand.” If these parents don’t receive assistance, they are at risk to postpone telling because they have no active plan, need help working out an age appropriate telling script, and perceive the telling as something more like an announcement than an ongoing process [6,7,14].
Disclosure during the school years typically means that the parents will tell the story in one piece, not gradually. The reactions of children in this age group can vary tremendously, but parents often report a first response of disinterest. Importantly, there is no one “correct way” that children respond to disclosure in this age group and the same child can show changing levels of interest over time. Both research and parents’ reports suggest that children may be thinking about their donor conception but not discussing it with their parents. In Vanfraussen’s 2001 study, nearly half of the 41 children were interested in having more information about the donor, but only one-third of those reported discussing this with their parents [16]. Similarly, Blake et al. found that by age 10, most of the donor-conceived children did not talk to their family about the subject, perhaps reflecting their parents discomfort in discussing it [17]. It is important that counselors recommend parents find opportunities periodically to raise the subject, update the story and explore any questions.
The ongoing story
Interest in the donor
Disclosure is a multilayered process. First, parents must decide when and how to share with children the basic information about their donor conception; and second, determine when and how they will share information about the donor. In early conversations, with young children, parents tend to depict the donor as a generic “nice person” who contributed “missing parts” and downplay any significance attached to the donor as a person. However, as young children make sense of their social world, creating a mental image of their social network and placing people in it, they will think about where to “put” the donor and how to integrate the donor into their understanding of their family story.
One mother’s story describes how her 5-year-old son drew a picture of his family and included the donor: “Adam was…making a Mother’s Day Card. He had drawn people on the front, inside and on the back of the card. Inside he drew a picture of himself, his mother, his father and two sisters. I asked who the man on the front is: ‘He’s the guy who gave you sperm’” [18, p. 173].
The process of understanding the meaning of the donor to the individual child and the family continues throughout childhood. Young donor-conceived children are often expressive in their thoughts and feelings, sometimes in surprising ways. Many comments affirm the child’s positive feelings about donor conception. “I would not have been born without help from the donor”; “I don’t care how you made me, as long as you made me” [7, p. 2239]. Some comments reflect distinct feelings about the donor, “I think of him as a friend since he helped us” [18, p. 175], and about the parent’s infertility, “Why doesn’t Daddy have any sperm?” [6, p. 1396] or as a father reported, “Did it make daddy feel sad that he didn’t have any sperm.” Some ask questions about the donor that are insightful or make the parents uncomfortable such as “Does he have a family?” or “Why can’t I know his name” [6, p. 1396]. During the school years, the early story may now be understood with a shock, as with the 8-year-old boy who asked, “Is it right what that book says, that I don’t come from daddy’s seeds? It was somebody else?” [18, p. 142] or as reported by her mother, a girl the same age who asked, “You are still my mom, right?”
In late childhood, the interest in their own story can shift to an interest in the actual person who gave the eggs or sperm. Children typically will ask questions about the donor or ask for more information, such as whether the parents have a picture of the donor, if they can meet the donor, or if the parents have the donor’s name. Parents are often ambivalent about their child’s interest in the donor, who while grateful to the donor, may prefer not to think about him/her. One mother put it this way, “I had trouble with my daughter’s looks at first because it drove home the fact that we had used a donor.” While one parent, in response to her child’s questions, reported, “I don’t think she [child] would be normal if she wasn’t curious.” Another more reluctant parent reported, “I’m just hoping that [my children] won’t have that huge curiosity to go out and try to find the donor” [14].
It is common for children in middle to late childhood, 8–11, to explore how genetics play a part in their story, seeking to connect the donor’s genetic contribution to their own traits. Only one children’s book for older children addresses this directly, depicting a girl who does not look like her mother, and who is told she gets her red hair from the donor [19]. While they have a greater understanding about conception, children of this age are often still uncertain about how it exactly works. Consider as 9-year-old Lisa tries to puzzle out the connection between genetics, her donor conception, and her relationship with her parents.
“…I was born in my mom’s uterus, but I was born from another lady’s egg. My mom’s hair is brown, my dad’s hair is black and…mine is blond. The…reason is that the lady that made the egg that I was born from…her hair was blond, like mine. So, I have my dad’s ‘chubby’ cheeks, my mom’s curly hair and the lady’s blond hair.”
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