DISCLOSURE DECISIONS

by Britta Dinsmore, Ph.D.

One of the topics of greatest interest and concern to parents or prospective parents via egg donation is disclosure. That is whether, when, and how to tell one’s child about the role of the egg donor in conception.

WHETHER TO TELL

Mental health professionals generally agree that it is in the best interest of the child to grow up knowing about his/her donor conception. For one thing, this sets the stage for a parent-child relationship built on honesty and trust. It is difficult to create a foundation of trust and integrity when there is dishonesty about a fundamental part of the child’s history in relation to his/her parents, even if that dishonesty is “by omission only.”

Another reason therapists advocate disclosure is the belief that children need basic information about their origins for healthy identity development. Clearly, accurate medical history and genetic information are important for practical and pragmatic reasons. An understanding of all of the pieces that came together to create the child may be equally important from a psychological perspective in helping the child develop a positive and cohesive sense of identity.

A third reason that mental health professionals often favor disclosure is that research shows that secrets in families are damaging. Children can often sense when there is something in the family that is “not to be talked about.” Unfortunately, children almost always assume the “secret” must be about them and that it must be bad. Secrecy also creates more stress for non-disclosing parents who must live with anxiety related to questions, such as “If my child knew, would he/she still see me in the same way?” Such anxiety can create unnecessary distance or tension in the parent-child relationship. Another source of stress for non-disclosing parents is the fear of accidental or unplanned disclosure by friends or family members who may know about the use of egg donation (as is always the case when the donor herself is a friend or family member). Additionally, if either of the non-disclosing parents has ambivalence about disclosure, second guessing or guilt may ultimately lead that parent to disclose at a later date.

Accidental or belated disclosure can cause a tremendous sense of hurt, anger, and betrayal, which almost certainly impacts a child’s attachment to his/her parents, and willingness to allow trust and intimacy in future relationships. Alternatively, research involving interviews with families via egg donation who have planfully disclosed to their child indicate strong parent-child bonds that do not appear to be negatively impacted by the disclosure (Nachtigal et al, 2005). In all cases, the parents interviewed described the outcome of the disclosure either positively or neutrally. Not one parent regretted disclosing and many parents reported feeling relieved after disclosing. In another study looking at 12-17 year olds conceived through sperm donation who had been told about the nature of their conception, 75% reported “always knowing” and were “somewhat to very comfortable with their conception origins.” All but one reported that the impact of knowing this information on their relationship with both the genetic and non-genetic parent ranged from “neutral to positive” (Scheib et al, 2004).

WHEN / HOW TO TELL

Many mental health professionals recommend “talking early and ongoing” about donor conception. This recommendation is based on the premise that it is preferable for children to grow up “always knowing” that they have been conceived through egg donation, so that there will be no disruption in the child’s sense of identity or sense of belongingness within the family. Parents can gradually introduce pieces of the “story” in age appropriate ways, over time. In doing so, parents are able to create many opportunities for repetition (to support a more continuous sense of self and attachment), as well as many opportunities for a positive framing of the story. One recent retrospective study showed early disclosure to be clearly more favorable than waiting until adolescence or adulthood (Jadva, 2008). While parents may fear anger or rejection, the research does not support this (Daniels, 1997) and suggests, instead, the most common response to be interest and curiosity (Rumball & Adair, 1999).

Parents often cite fears of overwhelming their child with overly complex and emotionally intense information before the child is ready to handle it. It’s o.k. to start with simple, age appropriate language that follows the child’s lead. It can be as early as 3 or 4 that children begin noticing pregnant women and learning that “babies grow inside of women’s bodies.” Children’s observations and questions can offer important opportunities for initiating conversations with your child about his/her own special story. A parent can say something along the lines of “It takes many pieces to come together just right to make a baby” and “We needed some special help with one of the pieces to have you.” In stressing how loved and longed for the child was, parents may add something about this being “one of the best gifts ever received.” Parents may want to try out different words for describing the “help” that was given. Some possibilities include “piece,” “part,” “ingredient,” “cell,” “seed,” or “egg.” Some parents may include the idea that they were waiting for “just the right piece/part/cell/seed” that would bring the right child to them. Parents may differ in the relative emphasis they place on either the donor herself or the doctor/clinic when talking about who it was that gave the special gift. Religious or spiritual beliefs may be incorporated into the story as well. There are several good children’s books available that parents may find helpful in reading to their children. Some of these include: “A Tiny Itsy Bitsy Gift of Life, An Egg Donor Story” by Carmen Martinez Jover, “Hope and Will Have a Baby: The Gift of Egg Donation” by Irene Celcer, “Mommy, Was Your Tummy Big?” by Carolina Nadel, and “A Part Was Given and An Angel Was Born” by Rozanne Nathalie.

Children’s understanding of the information will change over time and their questions will reflect greater complexity in their understanding as they mature. It is best to think of disclosure not as “a one time event but as an ongoing conversation.” This also helps reduce the pressure of feeling as if the disclosure is a “one and only opportunity that has to be done just right.” It’s always o.k. to revisit a conversation and say something like “You know I’ve been thinking about the question you asked the other day, and I came up with something else I wanted to say about that….” There is always opportunity to “fine tune” and build on earlier conversations. If you’re not sure how you want to answer a particular question, you can always say something along the lines of “That’s a good question…I’m going to have to think about it a little more and get back to you. It’s kind of complicated.”

COMMON FEARS

What if disclosure causes my child to be less attached to me or to reject me?
Attachment is NOT a function of genetic relatedness. Attachment is developed through interactions in the parent-child relationship characterized by responding to one another, learning about one another, sharing with one another, and depending on one another. If a child has questions about what it means that he/she is not genetically related to his/her mother, what he/she is really asking for is reassurance from you about what makes a family and what constitutes a parent-child relationship.

Commonly in adolescence, children go through a process of identity development which requires differentiation from parents. Sometimes this can feel to parents like an outright rejection of them. For the non-genetic parent, there may be added sensitivity to this issue. It is important to maintain perspective during this time that in order to individuate in a normal and healthy way, there must be some “pushing away.”

What if my child has questions about the egg donor or wants to meet her?
Children will vary considerable in their interest in information about the donor. Interest or curiosity in the donor in no way reflects poor emotional adjustment on the part of the child or a lack of loyalty or love toward his/her parents. It’s quite possible that the more information available to the child about the donor, the greater security the child will have in his/her identity and in his/her relationship with his/her parents. Thus, it may be useful to keep the donor profile and have it available to refer to in answering questions over the years or, ultimately, to show to the child.

Studies looking at adolescents conceived through sperm donation (with identity release donors) suggest that some do have a curiosity in meeting their donor (Scheib et al, 2004) but not because the donor was viewed as a “parent figure.” The adolescents who wanted to meet their donors were simply curious and wanted to learn more about what the donor was like.

While this was not so true in the past, increasingly, many parents would like to preserve for their child the opportunity to meet his/her egg donor someday if this became important to him/her. In practical terms, unless prior arrangements were made at the time of the cycle and the donor and recipients exchanged identifying information, it is not overly likely that a child or recipient parent would be able to locate his/her egg donor. Many recipient parents falsely assume that “someone is keeping that information up to date” and that if they want access to the information someday on behalf of their child, all they have to do is go back to the fertility clinic or donor agency and ask. Fertility clinics and egg donor agencies say they don’t see this as their job and/or feel that the logistics of maintaining updated databases would be overwhelming. Even though clinics and donor agencies routinely ask donors and recipients if they would be willing to be contacted in the future if “medically relevant information” became available, in practical terms, this would be difficult to execute because of the lack of updated records.

One voluntary registry, Donor Secure, was developed with the specific mission to safeguard valuable and sensitive identifying for the future, should both parties want to get into contact with one another someday. The way it works is that both parties voluntarily agree to have their contact information kept by Donor Secure; if party “A” wants to contact party “B” at some point in the future, Donor Secure contacts party “B” and asks how they would like to respond to the request for contact. Options might include contact by telephone, letter, e-mail, or in person. There are also registries, such as the Donor Sibling Registry, that have been developed that allow donors, recipients, or offspring to register retroactively and post all relevant information about themselves (date the donation occurred, donor number, demographic information, etc) so that parties that are mutually interested in establishing contact may do so.

What if disclosure causes my child pain or makes him feel “different?”
There is reassuring evidence that children conceived through egg donation are every bit as well adjusted, socially and emotionally as their peers and that they enjoy strong and healthy parent-child bonds. It is certainly possible that, over the years, there may be some need on the part of a child conceived via egg donation to “work through” what this all means in terms of his/her identity and his/her relationship within the family and to the non-genetic parent. However, it is important to remember that your child does not carry with him/her the additional burden of the pain and sadness you may have felt in response to your infertility. Some of your pain and sadness was based on the loss of the dream of “how it was supposed to be” and your lifelong assumptions about how families were supposed to be created and what constitutes a parent-child relationship. If you are disclosing to your child at an early age, he/she will not have these same assumptions and will be much more likely to accept the idea of donor conception without a sense of sadness or loss.

Additionally, while as parents we sometimes experience the impulse to want to protect our children from any source of difficulty or pain, not only is this unrealistic, it’s also not in the best interest of our children. When children feel well-loved and well-supported by their parents, times of internal struggle and challenge provide opportunities for inner growth, not lasting pain and sadness.

COMPLICATED CIRCUMSTANCES

Strong Religious/Cultural/Familial Disapproval

There are cases in which religious or cultural biases against reproductive technology in general or third party assistance in particular are strong enough that parents feel that openness about egg donation would increase the chance that their child would be ostracized, stigmatized, or rejected. In these cases parents have to carefully weigh all of the factors involved and proceed in the way in which they are most comfortable. It may be helpful in such situations to educate the child about privacy issues and what is talked about at home vs. outside of one’s immediate family.

Family Composition Mixed/Blended

In families where one child has been conceived through egg donation and other children in the family were conceived without the assistance of a donor, there may be concern by the parents that the child conceived through egg donation will feel “less than” his/her sibling(s). In this case, the idea that “families come together or are created in many different ways” is especially helpful. Parents can also reaffirm “our family came together just right with exactly the two (or three or four) children we were supposed to have.” This conveys the sense that each child is just as he or she should be and that “it all came together just right.”

Disagreement Among Partners

It can be difficult when partners disagree about disclosure decisions. In many cases, even if there is initial disagreement, partners can come to agreement over time. While it may be difficult to imagine what might change to change one’s mind or perspective, often this does happen over time if regular, respectful discussion occurs. It can be useful to set aside regular time to discuss the issue, focusing more on clarifying and exploring thoughts, feelings, values, and assumptions, rather than on “winning the other person over to one’s own point of view.” If, over time, there appears to be no progress in reaching a consensus, it may be helpful to meet with a professional who can help you resolve the impasse.

DISCLOSURE TO OTHERS

Some parents find it useful to think about limiting their disclosure to others to those needed for support. It is difficult to know how you might think and feel after the child is born and the emotions of infertility are behind you. It can be wise to take care not to make decisions that can’t be “taken back.” As the saying goes, “you can always tell more people later, but you can’t ever “un-tell.” This often becomes particularly important after the child is born and develops his or her own personhood with related rights and privacy considerations. Some parents subscribe to the idea that it is important for the child to be “one of the first” rather than “one of the last” to know about his/her story. Proponents of this point of view contend that it is valuable for the child and his/her parents to “grow into” and assimilate the information themselves, to truly “own” it as their family story before beginning to share it with others. Sometimes parents worry that if their child knows before the grandparents do, there will be hurt feelings on the part of the grandparents. The bottom line is to ask yourself whose feelings and considerations you feel most inclined to protect, your future child’s or members of your extended family. On the other hand, your parents may be the people you need to have alongside of you as you navigate this difficult journey. One perspective is that nobody else has the “right” to know and that disclosing to others should be based on what would be supportive to you and what you and (if applicable) your partner are comfortable with.

Britta Dinsmore, Ph.D. is a licensed psychologist who specializes in women’s health issues, including the assessment and treatment of the emotional, psychological, and relational aspects of infertility. Dr. Dinsmore works in private practice in Portland, Oregon and joined Oregon Reproductive Medicine as a psychological consultant in 2005. She provides consultation, education, and ongoing counseling to individuals and couples experiencing infertility and regularly consults with prospective parents contemplating or undergoing egg donor IVF. Additionally, Dr. Dinsmore has developed components of Oregon Reproductive Medicine’s wellness program and has conducted support groups and workshops for the program. Dr. Dinsmore became interested in the field of infertility counseling after resolving her own fertility challenges by becoming a mother through egg donation. Today, she is a mother to two boys, ages six and four. She feels passionately about egg donation because she knows first-hand what a wonderful way it is to create a family.

Dr. Dinsmore earned her doctorate in psychology at the University of Oregon in 1998. She completed a two-year graduate fellowship at the University of Oregon Health and Counseling Center and a residency at Pacific University’s Counseling Center. Dr. Dinsmore has also worked in the behavioral health programs at Providence Medical Center and as a psychological consultant for Hazelden Springbrook. Dr. Dinsmore is a member of the American Society for Reproductive Medicine and the ASRM’s Mental Health Professionals Group and has completed post graduate training sponsored by the ASRM Mental Health Professionals Group. Dr. Dinsmore is a member of RESOLVE: The National Infertility Association, as well as the American Psychological Association, and the Oregon Psychological Association and has served on the board of the Oregon Psychological Association. Dr. Dinsmore has been licensed as a psychologist in the State of Oregon since 1999.

Other areas of professional interest include: pregnancy loss, postpartum adjustment, parenting, eating disorders, and body image. When she is not pursuing professional interests, Dr. Dinsmore enjoys spending time outdoors with her family. Hiking, camping, skiing, soccer, and gardening are all favorites. Dr. Dinsmore is a native to the Pacific Northwest and loves living in Portland in spite of the rain! Dr. Dinsmore can be contacted at Brittadinsmore@comcast.net.