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Disclosure, When Does It Begin?
Sunday April 12th, 2009 05:00 PM

Patricia Mendell, LCSW, with permission from The American Fertility Association, Revised from AFA Infocus Magazine, published in Spring 2002, “Our Children”

The word disclosure, in ovum donation, refers to the dilemma of whether to tell your child and others of his/her donor origins. In actuality, the real “disclosure dilemma” begins long before a pregnancy or selection of an egg donor program.Often, couples pondering this choice have been open in their discussions with friends and family long before ovum donation is suggested or even mentioned by their doctor.Some have even shared with friends that ovum donation may be needed as a “last resort”.Few know the ins and outs of this choice. Some patients have even admitted that during this early stressful period, they have talked to any number of people.Many cannot even remember who they spoke with or what information was shared.With the stress of this family building choice, the couple forgets that ultimately, the decision to divulge details of the donation should be the child’s story to tell.

For many battle weary couples, the road to ovum donation is filled with repeated disappointments after many failed fertility treatments. For others, the need for ovum donation will come as a surprise when at the age of 30, 40, 45, or even 50; they are not able to use their own eggs.The final group is known as the latecomers.Those are individuals who would like to parent but know that they are unable to have children with their own eggs, due to their reproductive age. For the first two groups the support from family and friends has often been felt as invaluable in their infertility struggles.Even for the latecomers, recipients look to the support and feedback from others, as they examine the myriad choices of donor egg programs. These moments of sharing are all part of the disclosure dilemma.In fact, disclosure has often begun long before most individuals even realize it. Even when couples vow to tell no one, studies have revealed that one of the partners will inevitably share their secret with a friend without telling the other.
 
Often, when couples realize that ovum donation is their only option for pregnancy they may start to be concerned about what they have shared with others about their fertility choices.With the reality of egg donation in front of them, couples find themselves frantically trying to undo the information they have shared with family and friends. This sudden retreat from friends often leaves a couple stranded as they attempt to work through their disclosure concerns. For some, support organizations, like the AFA and psychotherapists trained in the field of third party reproduction, may be excellent places to become not only educated consumers, but psychologically comfortable with this choice of parenting.
 
While I have found that many individuals look to ovum donation as a way to solve their fertility issues few understand the implications of their decisions. Over the years as the coordinator of the AFA Ovum Donation Seminar Series, I have met many attendees who were taken by surprise as to the number of choices that exist that will impact their family now and in the future. In the need for their privacy many will inadvertently cut off the opportunity to explore all their options. The AFA seminars offer a safe and open environment in which to explore information with others like themselves. In the seminars, which stress confidentially, there appears to be an unwritten law amongst attendees regarding respect for others privacy. Others who attend ovum donor support groups find the experience invaluable as a safe and secure place for discussion of their concerns and their choices.Often, during those early months, when others are not aware of the pregnancy these groups can provide a private sanctuary where they can discuss their joys and fears about the new journey they are on. Although the Internet can also offer an opportunity for recipients to share and learn privately from others about their experiences in the world of ovum donation, it can also be a place with inaccurate and unfiltered information.
 
The decision to disclose is not always an easy decision even for parents who are adamant that they will share the information with their child. Because there has been little practical research on third party reproduction, and the effects of telling (or not telling) children about genetic origins, parents must weigh their values and use available knowledge as to what path to follow. While most mental health professionals support disclosing to the child, many are divided as to when, how, and what needs to be shared.There are some mental health professionals who even question telling the child at all. Other professionals feel adamant that it is the right of the child to know his/her genetic roots and no other choice should be considered.While most parents will find a level of comfort somewhere between full disclosure and secrecy, it is important for those working with them to understand the impact of these choices in the context of their lives.
 
If understanding the psychological and medical aspects of ovum donation is difficult for recipients to grasp, then it is not surprising that friends and family may not comprehend this choice.Therefore, it is not uncommon for others to make comments that cause much pain to recipients who are still resolving their own feelings. Often, inappropriate comments both by those who know the genetic origins and by others who don’t are made out of ignorance and lack of sensitivity to the situation. The following questions are just a small sample of what is said to recipients: How did you get pregnant?; I thought you said you had a high FSH?; Aren’t you too old to have a baby?; You know the baby doesn’t look like either of you, why is that?; Did you do donor egg?; So, are you going to tell the child that you are not his/her mother?; Won’t the donor want the child?; If it were me, I’d never do ovum donation; and many more…….
 
For many, working through the loss of their genetic connection is part of a gradual process of resolving their doubts and regrets. For this reason, it is not unusual for mental health professionals to initially suggest to recipients that they remain private, with their donor decision.Once information is imparted, it is very difficult to retrieve it without leaving doubts in the minds of those around you.Yet, being silent is for many, an overwhelming burden that grows as the reality of this option comes to fruition.Numerous recipients express that being able to share this life path with a select group of family and friends make the initial burden and stress easier.Without support it can be an isolating and lonely experience.
 
Some potential parents feel that their biggest obstacle with the ovum donation is the fear of telling their child.The feelings of uncertainty about what, how, and when to tell, make the reality of disclosing an impossible burden.In fact, disclosure is not a onetime event that you tell to your child.It is a process that evolves as the child develops.As with all subject matter, parents need to assess the cognitive level and emotional readiness of their child when giving information and answering questions.It is not unusual for couples to be concerned that one wrong word may damage their child or their relationship with their child, causing irreversible psychological damage. Actually, becoming parents is a great leveler of those earlier fears of rejection.Couples begin to understand that raising their child is more about learning parenting skills than disclosure.Yet, many remain fearful of how others will receive the news of their child’s origins. Some regret having disclosed their child’s genetic origin to anyone.Yet, these couples, having shared this information, open the possibility that their child may learn of his/her origin from others. It is often unclear whether they are fearful for their child or themselves. The reality is that the playground can be a difficult place.Children tease each other over their outward differences. It is not uncommon for parents to intertwine their own unresolved feelings of childhood traumas with fears about their donor children’s possible rejections.It is important to separate their own childhood demons from those facing their children.We cannot take away children’s pains and struggles as they grow and develop.Building a strong secure relationship with children based on truth and openness will enable parents to know when their children are in pain.Parents need to be there to help teach their children how to navigate those times.
 
One woman who was adopted at birth discovered her origins at age 13, on a visit to her pediatrician’s office.While alone in the examining room, waiting for the nurse and the doctor, she innocently picked up her chart and discovered her true origins.This caused a divisive wedge between her parents and herself for months.After several months of acting out, she revealed her anger toward them about the secrecy of her beginnings.She learned from her parents that they had been determined that she should never know the truth out of fear that she would reject them.Ironically, their actions to hide the truth and not disclose almost cost them their relationship with their daughter. With the help of a mental health professional, the family was able to move beyond this painful secret.Not everyone is as forgiving as this young woman about her years of deception.
 
What is important in this disclosure dilemma is that couples contemplating this option seek out support and help.Trained mental health professionals experienced in this area can be an invaluable resource for an open, nonjudgmental discussion of these concerns.In examining the various choices in disclosure, it is important that the mental health professional be empathetic and respectful of the fears and the concerns of the world that the recipients’ live in. Often, parents are unsure about what, if, who, how much, and when to disclose.In not pushing their own bias, mental health professionals can encourage parents to revisit these issues as the child grows and develops.
 
The most common fear expressed by couples about disclosing is the possibility that they or others will hurt their child with the revelation that an egg donor was used. According to Carole Lieber Wilkins, a therapist and parent of an ovum donor child, “lifelong issues” in alternative families will depend in a very significant way upon the “regular” life issues that befall every family.She goes on to say that death, divorce, illness, geographic moves, financial distress, learning disabilities, and ADD may all take precedence in a child’s headlines of what is major in their life issues.Their genetic origins may not be as big a deal for them compared with coping with other childhood experiences.