Jean Benward, LCSW and Patricia Mendell, LCSW
The first birth of a child conceived through ovum donation occurred in 1984. Since then an increasing number of fertility patients have used egg donation to become parents. As a result, the number of children born via egg donation has increased every year. Although the exact number of children born from egg donation is not known, estimates are that between 19951 and 20072 there were 51,223 births recorded from fresh donor oocyte cycles in the US. During that same period, 12,157 births were recorded from frozen donor oocyte cycles, resulting in a total of 63,380 births. This is an underestimate of the actual number of children born since many of those births included multiple infants. Estimating a 35% rate of multiples then the actual number rises to more than 85,500 children. Including estimates from 1991-2006 for Australia and New Zealand the number is well over 90,0003. These statistics do not include Canada, Israel, Europe and other countries.
CONSIDERING OVUM DONATION
The process of becoming a parent through egg donation entails multiple decisions. These decisions include reaching a level of comfort with the loss of one’s genetic connection; deciding on a donor and thinking about whether to disclose donor conception to others. For many parents the decision to use an egg donor is not an easy one.
In our clinical experience, we find that parents often seek guidance about disclosure. Prospective parents wonder if they should tell family and friends that they are considering using egg donation. And, if they do tell, parents wonder what others will think if they find out. Frequently, in the process of making the decision, potential parents may share their thoughts with many friends and family members. Some even discuss detailed information about the donor they selected. Few focus on the fact that once the information is out, it can’t be taken back. This leaves the door open for children to inadvertently find out about their donor conception or to be upset that so many others know the details of their conception before they do. One needs to balance the need for support with the need to respect your child’s privacy.
The most difficult decision for parents is whether to tell their children they were born with the assistance of ovum donation. Parents want to know how and when to discuss donor conception, what language to use, how they will feel, how their children will react and whether it will negatively affect their relationship with their child.
For many their first and last discussion about disclosure happens if their IVF program requires them to meet with a reproductive mental health professional before their IVF cycle. The purpose of this meeting is usually two-fold: to explore the readiness and the concerns of the potential recipients before they undergo egg donation and to discuss the disclosure question. For many recipients, the goal of the interview will be simply to “pass” the meeting and go ahead. It can be difficult to really appreciate disclosure at this point, when you don’t yet have a child. We hope that our fact sheet can be a resource for you both before conception and after.
THE DECISION TO NOT DISCLOSE
The decision to disclose or not disclose your children’s donor origin is influenced by a number of factors. These include personal history, the community’s acceptance of “alternative families”, values and beliefs about parenting, comfort level with “openness” in discussing family and personal matters in general, personal feelings about a child’s right to know his/her genetic origins, whether they think they can keep it secret and the risk of inadvertent disclosure. The influence of others also plays a part, including family, friends, mental health practitioners, medical professionals, the media, the internet and books.
Many parents have told us that they consider their choice not to disclose a private family matter. They do not feel that everyone has a right to know his or her genetic origins, that there is really “nothing to tell”, since the “donor just gave some cells”. Not telling the child or others may be chosen in the belief that it provides protection for oneself, one’s child and the family unit. Sometimes the decision not to tell is based on fear that the child will not accept the mother as a “real parent”, fear that family will not accept the child, fear about how the child will feel and fear that knowledge of the donor conception will harm the child’s self-esteem. The child, in their opinion, may experience donor conception as problematic, placing a wedge between the mother and the child. Others are concerned that their child might share the information indiscriminately with friends and family who may then say hurtful things to their child. Because some religious faiths remain wary of advances in assisted reproductive technology, not telling may also provide a safeguard against ostracism within one’s faith. Some point to the limited information that they were given about the donor as the reason not to tell their child. Their feeling is that limited information is more upsetting than not knowing their origins. And for some, the fact that there is no commonly known way to tell their child makes disclosing something they feel inadequate to do or fear causing harm if they do.
At first glance, non-disclosure may seem like the easier road to take. It appears to avoid a whole range of potential negative consequences. However, keeping the donor conception a secret from your child does not necessarily make it easier.
If you are thinking of nondisclosure as an option, consider the following points and discuss them with your partner and possibly a mental health professional that specializes in third party reproduction.
- Will having a secret have any negative consequences for you, your child or your family? Are you and your partner in agreement about your decision to not disclose? If no, will having this disagreement cause growing problems in your relationship? Is there a risk one partner will tell anyway, without agreement from the other? Will it interfere in your relationships with the child?
- What are the medical implications of secrecy? Secrecy may require lying about your child’s “family” or genetic medical history. Will you tell your obstetrician, pediatrician? If you don’t tell, what are the implications for your obstetric care and your child’s medical care? Will needless tests be ordered or will test results be skewed because the physician was unaware of the use of an egg donor.
- Maintaining the secret becomes more complex and problematic as the child can access their medical information, able to do DNA tests. or becomes aware of discrepancies in family medical history. What will happen if there is a genetic illness in your family and the child then believes that he is at risk for it? What if you learn that the donor passed on a risk of inheriting a certain illness? One mother stated that each time her children asked about family characteristics or medical concerns she felt her nose growing longer like Pinocchio’s.
Increasingly students are learning a great deal about genetics and inherited characteristics. A recent science exhibit for children gave out a list of physical characteristics that are genetic: whether you can roll your tongue, earlobe placement, hairline features, etc. Imagine your child coming home from a science project and asking why she is the only one with a trait when neither of the parents have it.
We obviously do not know how all ED parents feel 10 or 20 years later. However, some parents tell us that they regret the decision not to tell. They feel isolated and have no one with whom they can discuss their feelings. The non-disclosure feels harder to carry on over time. Children’s as well as other’s questions about who they look like are uncomfortable. For some, they imagined they would tell when their child was old enough; now, many years have gone by, they don’t know if they can do it and the issue of secrecy remains unresolved. At the same time, research shows that many parents have told someone else, in the family or outside the family, raising a serious possibility of the donor offspring finding out from someone else. As one donor offspring stated, “Telling the truth from the onset gives parents great freedom from the burden of secrecy.” Reports from an earlier generation of donor sperm offspring suggest: 1. Children not told that they were conceived with the help of a third-party sense that the parents are hiding something from them. 2. Offspring who find out inadvertently as an adult, or from someone else, experience a range of negative feelings, including feeling betrayed by their parents for not telling them and angry that others know more about their lives than they do. A recent New Zealand study that re-interviewed DI couples 14 years after treatment, found that a number of families still wanted to disclose, but were struggling with how to do it, felt a great need to talk about it to the researchers and had not had access to infertility counselors4.
In general, disclosing parents feel that their children have the right to information about their genetic origins, that secrets in families can be harmful, and the potential harm for non-disclosure outweighs any risks in disclosing. Those who do disclose believe that they can continue to have a close relationship with their children after disclosure, that they can explain donor conception in a positive way, and that disclosure does not threaten the family. Parents favoring disclosure consider the possibility that children might learn about their genetic origins from someone else or by accident. This could result in damage to the trust between parents and children. In the future, DNA testing will make it easy to determine whether any child is genetically linked to his or her parents. From this point of view, parents gain greater control and protect their families better by sharing.
When parents consider egg donation, they may imagine being able to control the information their child will have about their origins. This changes when the child can access this information him/herself. Remember, saying to others that there is no heart disease in the family, when your family has heart problems, will no longer go unnoticed by an adolescent. Parents who decide to tell their children when they are young are in a position to shape the initial disclosure discussion, using language that is comfortable to them and to create the family story in the way they would like it to be told.
A number of experts feel that maintaining secrecy about ovum donation is not the better choice for children and families. An Ethics Committee Report, from the American Society of Reproductive Medicine in March 2004, “supports disclosure from parents to offspring about the use of donor gametes in their conception”. The report noted the risk of an unplanned discovery and the negative impact that holding secrets can have on individuals and families.
Parents who use gamete donation are increasingly choosing to be open with their children about the use of a donor.
Current research indicates
- Parents report feeling anxious about how and when to tell their child their conception story
- When children learn at a young age, they do not typically have a negative response and deal well with the information
- Disclosure does not lead to rejection of the non-genetically related parent or damage the relationship
- Parents rarely regret disclosing
- Parents frequently report feeling relieved after disclosing genetic origins information with their children
TALKING WITH CHILDREN
Parents who choose to talk with their children about their genetic origins must decide when and how they will convey this information. We often hear parents say that they would wait “until the child is old enough to understand”. More often than not, they mean that they don’t want to discuss it until the child can understand the biological facts of reproduction. Many recipients have told us that they think of adolescence or even young adulthood as a time when their child will be old enough to understand. Given the challenges of the teen years for both parents and children, this is the least optimal time to first disclose. If children learn before puberty, the fact of donor conception can be incorporated in the developing sense of self; later disclosure will require a greater adjustment to the established identity and sense of self. Some parents have postponed telling because of uncertainty or worry. However, it is never too late to talk to your child about their donor conception. It may be more emotional or challenging but with patience, older and adult donor offspring can work through their feelings about their donor origins.
It is our belief that children should ideally learn about their donor conception in the early years. It is a time to tell the story of how you became a family. It is important for parents to understand that disclosure is not about a child’s accurate grasp of the biology of conception or the facts of IVF. And sharing is not dependent on your child’s intellectual development. As parents, we can find ourselves discussing complex concepts with young children, prompted by their questions about death, loss, and religion, for example. So, as with other complex issues, we can start talking with the young child in very simple terms. Since most young children have an evolving understanding of reproduction in general, there is no reason to expect that a young child gets the facts all right.
Keep in mind that sharing information is a process that evolves as children’s needs and ability to understand grow. The casual discussion and re-sharing of the information over time in the context of family life gives parents and children an opportunity to revisit and add facts to the story. Frequently over time, a shift happens for parents, as the child becomes older and verbal; the language may change as the story is reshaped and owned by the child.
Often though, children’s questions catch us off guard. One mother noted that her young daughter “started asking questions as we were driving to the grocery store”. As Mikki Morrisette states in her book Behind Closed Doors, “Children go off script. Off Script is the uncomfortable or surprising or profound moment when your child asks questions or makes a comment that you didn’t expect.”
“My mommy said a nice lady helped her have me by giving an egg. How did she know which egg was me?”(Jenny age 5)
It is important that parents remember that while genetics may play a role in what your child is like; genetics do not define who you are as a family. Don’t worry if you say too much or the information is too complex. Children remember only the information that is understandable at that stage of development. So, don’t expect them to be accurate or reliable in the understanding of the facts.
- “Mommy said she had bad eggs that were not good. So, this doctor helped mommy and daddy find a good egg that a lady wasn’t using and that was me. I am not sure what daddy did, but I think he helped somehow with a special machine that put me in mommy’s tummy where I ate and ate until I was big and came out.”
When a child wants to understand something in more depth, they will usually ask questions: such as how the egg gets from the donor to mommy. Their questions will tell you something about their thinking process.
Researchers have found that families and individuals tend to remember facts more accurately if they encounter them in a story and not a list. We present some suggestions below. However, it is important for parents to remember that the only “correct script” is the one that works for your family.
By the age of three or four, young children often understand that babies grow within the mother’s body, so A simple story might include the following
- mommy and daddy wanted a baby and were not able to make one
- they then decided that they would ask for help
- they found many caring people who gave them a lot of help
- they found a special lady who gave her eggs
- they used clinics and doctors to help them
- The result was the special baby that made mom and dad very happy.
A story that refers to a doctor and others who helped so that the child could be born is well within the grasp of a preschooler’s understanding. The story is presented in a positive way and donor egg seems normal to your child. Early stories can introduce the concept of help from a donor and begin to normalize donor conception. As one exuberant young child said, “I’m sure glad you and Dad live in modern times, so you could have ME!
Although it is our experience that young children can begin to make sense of sperm, eggs and uterus in their conception story, some parents have instead chosen to elaborate with more factual details at a later age. In a study of California parents, “Strategies for Disclosure: How Parents Approach Telling Their Children That They Were Conceived With Donor Gametes”,5 many of the parents who had decided that they would tell their children at “the right moment” . . .” “around 9 to 11 years of age” found themselves disclosing to their children at an earlier age, around 6. In our clinical work, we find that many parents have chosen to elaborate on circumstances of their child’s conception in the early primary school years around age 7. Parents have found this is the stage when they really begin to feel the importance of disclosure if they have not done so before. This seems intuitively to parents to be a good time as they see their child moving out of the stage of magical thinking and increasingly using rational ideas to explain things. Because children at this age have established a sense of security and a sense of self, they are adaptable and resilient at this stage of life.
One parent in anticipation of telling his (or her) offspring decided to start creating the background for the eventual disclosure by doing the following: “I knew that I had to tell my child and so I decided to start a tradition that every Christmas we would give anonymously to a family. Our hope is that these gifts with no name would be a metaphor for the anonymous donor. We want our son to feel good about the lady that gave the egg that helped create him.”
Remember, it is normal to be nervous about discussing donor conception with your child. Even parents committed to disclosure have anxiety and ambivalent feelings about it. Many parents dread the first time. It is a tremendous relief to have that first step over. Do not worry if you feel you didn’t say it quite right the first time. You will have more opportunities. Parents can be taken by surprise to find that their own feelings of sadness and anger about infertility are stirred up by discussing it with their child. This is natural. It gets easier with time. Remember that being comfortable with disclosing is a work in process. If parents waited to be totally comfortable with telling their child there might never be a “perfect time” to disclose.
“My daughter Jamie is now 8. I’ve constantly thought about the moment that I would begin to tell her about the donor. Yet, I just can’t seem to bring myself to do it. Once I tell her, life will be different forever and the difference is what I live in fear of for her and for me. Yet, I want to tell soon, because she needs to know.”
Those who convey openness and interest in their children’s feelings and questions are better able to help their children come to terms with the personal significance of their conception story. Likewise, as they work on understanding what a donor is, children are capable of responding with acceptance and insight. Commenting about their sperm donor one boy said: “We should buy that man a present”.6 In talking about their egg donor one girl said, “So, without the donor I wouldn’t have been born?”
Pre-teens (ages 10 – 12) begin to wonder about the donor in ways that are more specific: they wonder what she looked like, whether the parents have a picture of her, and what her personality is like. They are interested in the donor’s physical and genetic characteristics in their process to understand what the donor conception means to them. One girl brought this up by asking her mother “why don’t I look like you? when my friend looks like her mother”. Growing understanding of conception, genetics and society’s view of parenthood is often accompanied by expression of empathy for the parents. One 12-year-old boy informed his mother, “I am sorry Mom, that you had to go through so much.” If you have a picture or more in-depth information on the donor, this is a good time to ask the child if he or she wants to have more information.
While telling your child that he/she was a “precious gift” will delight young children, it will not answer all the questions of your older child and adolescent. The onset of puberty is marked by a steady growth in the ability to think abstractly. Moving into adolescence, children begin to think about themselves and their families in greater complexity. As adolescents strive to establish greater independence, they may have more questions about the choices you made that led to their birth. As adolescents have an increased ability to take the point of view of another person, they are more likely to wonder about everyone involved in their conception. Adolescence is about developing a sense of self and establishing the independence necessary for adult functioning. Issues of identity become important to adolescents, as is the ability to make sense of their worlds for themselves. To make these developmental leaps, adolescents can desire more information about the donor in order to understand the unique aspects of their own identity. A good relationship with parents can coexist with offspring’s interest in the donor. As an adolescent’s abilities and range of feelings expand, their parents’ task is to provide the stability their children need to integrate a sense of self as they move toward adulthood. While identity development may be more complex for donor-conceived teens, donor conception itself does not necessarily result in a negative effect on your child’s identity. Donor conception is unlikely to be the single defining factor in your child’s personality and identity.
What if your child expresses interest in the donor? With parental disclosure becoming more common, donor programs are responding by providing a great deal more information about donors. While you might not want to think about the donor now as you are starting your family, you might later wish you had received and kept the donor information. Your adolescent will be grateful.
“When I first thought of doing donor I decided to go to an anonymous program because I did not want to know much about the donor. Now that my kids are here, I wish I knew more… and even had a picture. The one thing I knew about the donor was she loved animals. Funny, my husband and I are scared of dogs. My son is also fearful, but my daughter wants to stop and pet every animal on the street. I laugh each time it happens and am thankful for the donor and her qualities. Now I wish I knew more. How can I tell my kids if I don’t know anything?”
Does this mean you’re not my real parent?” This statement is one that many parents through ovum donation fear the most. In fact, there is little evidence that teens actually say this to their parent. We have rarely heard of cases where teens, though gamete donation or adoption, actually pose this statement or accusation. They are likely to work at the meaning of their genetic connection to the donor and the meaning of genes in a family, but they do not reject their parents. They are unlikely to see the issue as “real parent” vs. “Not real parent”
• As award winning filmmaker Barry Stevens puts it: “Throughout life when people ask, ‘Who’s your real father?’ I … stop … and say, ‘My real father is the man who raised me’. That’s real to me… There’s a sperm donor and a … father and these roles both exist.7
All parents share similar worries about how their child will react to disclosure. It is our belief that knowledge of one’s donor conception does not inflict psychological damage on offspring. Donor offspring who have known of their origins from the beginning have said that they are glad their parents are open with them and always ready to answer their questions.
Speaking with a mental health professional with expertise in reproductive issues can resolve impasses and help in making important decisions about discussing ovum donation with children. The counselor provides the support that helps recipients explore a fuller range of feelings and concerns. Many mental health counselors report a growing number of parents returning for counseling, seeking help around help with disclosure. With the help of organizations like The American Fertility Association, parents may also develop a network with other families who have chosen egg donation.
Your child’s understanding of their donor conception is a process that occurs over several years. They reflect on what they have been told, ask questions and come to understand the role of genetics, the meaning of family, and their thoughts about the donor. We believe that your children can grow up confident and comfortable with their donor conception. As one donor offspring said, “Yes, I was grateful to know the truth about myself. My mother knew that it would create as many questions as it answered, but respected and trusted my ability to decide what this meant to me” It is important as parents to keep in mind that your child’s questions about a donor should not be considered pathological or a rejection of you as their parent. Instead it should be seen as healthy and a natural part of their development and understanding their identity (who am I?).
Parents ultimately must make their own decisions about telling children. In deciding to tell others outside the family, parents must gauge each relationship and assess the impact that telling will have on the child and the family in the future.
- Disclosure occurs in stages, sometimes with planned conversations and sometimes in response to children’s questions.
- Young children (age three or four) usually know that a baby comes from a mother’s body.
- Most children around age seven can understand more complex concepts
- During adolescence, donor offspring may want more information about the donor to help them better understand their own personalities and appearance.
- The counsel of mental health professionals and support from organizations such as The American Fertility Association can be a helpful resource.
We recommend the use of storybooks about egg donation written for children there are several available now.
SOME QUESTIONS CHILDREN MAY ASK
Preschoolers might ask, “Where did I come from?”
Mommy and Daddy wanted to have a baby very much. We tried and tried but we couldn’t. Then we went to a doctor who helped us. “You grew inside Mommy, in the uterus, for nine months. That’s how all babies are born. Mommy took care of you there until you were ready to be born. Then you came out and Mommy and Daddy saw you for the first time. We were so excited to finally hold you.”
Some children ask, “How did I get inside you?”
The doctor helped place you inside Mommy’s uterus where babies live after they are first made.
Most young school-aged children are ready to be told more about their genetic origins and might ask, “How was I made?”
To make a baby you need an egg from a woman and sperm from a man. The sperm and egg grow into a baby. We couldn’t use Mommy’s eggs (you may want to give a reason) so we went to see a doctor who helped us find a donor.
“What’s an ovum donor?”
An ovum donor is a special woman who gives her eggs to another woman who wants to have a baby but can’t use her own eggs. Most of the time, she gives her eggs without ever knowing or meeting the people she is helping. We learned some things about the donor we used, but we never met her, and we don’t know where she lives. (This explanation will vary if it is a known donor.) You may want to reflect with your child that he or she would not have been in your life without the donor. It is also important to share your feelings that he or she is the child you were meant to have.
“Why would someone give her eggs?”
The donor is someone who likes to help others. And she feels good about helping a couple like us become a family.
“What made you pick this donor?”
When children ask questions like this, it provides an opportunity to share how you chose your donor. Explanations may include:
- the emotional connections you made to a donor;
- personal statements a donor wrote in her application;
- family background or personal characteristics;
- the program/doctor helped to make a match and you trusted them;
- speaking or meeting the donor and knowing her feelings about helping us
What’s a gene? And who do I look like?
Genes are an important part of the egg, just as they’re an important part of the sperm. Genes determine traits like the color of our hair or eyes, whether our hair is straight or curly, and how tall we are. Genes influence how we will look and grow. Some of your genes are from the donor and some are from your father (if this is the case). Sometimes you look like Daddy because you came from his sperm and sometimes you look like our donor because you came from her egg and sometimes others may think you look like me because the donor looked similar to mommy.
Many of the questions listed above may come up again as adolescents struggle to understand who they are. What follows is a sampling of additional questions that may emerge during this time.
“Will I ever meet my donor?”
Here you have to explain the limits of your situation. You may have used an anonymous donor program. You may have used a registry or a donor finder. The following suggests a possible response to an adolescent who asks to meet the donor:
We were grateful to the donor, who made this decision hoping to remain anonymous. She also wanted us to be able to be our own family. Still, we can understand your curiosity. When you’re ready, when you’re an adult, finding out about the donor may be something you decide to do, and we would support your search. In the meantime, we can talk about it to try to answer any questions you have.
If you have a picture or more in-depth information on the donor, you may want to ask the child if he or she wants to have more information.
FREQUENTLY ASKED QUESTIONS FROM PARENTS
How will I feel like I am the mom?
Attachment and bonding start during pregnancy and grow from birth on. Your child’s attachment to you is a powerful force that cements the relationship. Developing your confidence as a mother is a process that happens over time for all new mothers. In that way, you will develop your identity as any other mother. It may also be true that at times you feel sadness out of a longing to have this child that you love come from your genes and look like you.
Won’t my child be confused if he knows about the donor?
Children are able to understand that individuals have connections with all different sorts of people; certainly, they understand the difference between Mom, Aunt, and Grandmother. Contrary to one’s fear, children understand the difference between donor and mother at a very young age.
What do we call the donor?
Our donor; not genetic mother, not biological mother, not real mother. We like to use the word “our” donor because it suggests that the donor “belongs to” your entire family, not just your child.
What if my child wants to meet the donor?
There is no way of predicting which child will want to know or meet their donor and who will not be interested. In fact, sometimes, the parents are more interested in the donor than their children.
““If the desire for a biological connection is strong enough to make adults choose donor conception over adoption then …it is possible … to imagine that the desire for a biological connection will be felt …by the donor conceived” offspring.8
“It can be terrifying for the non-biological parent to think about a child having contact with the donor…… have faith that your children know the difference between real and biological.” When donor conceived children search out their roots, it is not to find replacement parents; it is to complete their own identities.”9
- Buster JE. The first live birth donation plus 25 years of oocyte/embryo donor advancement”. SRM. 6:4. pp 22- 27. 2008.
- SART 2007.
- This data was compiled from University of Southern Wales, Sydney Australia, AIHW National Perinatal Statistics Unit from 1991-2006.
- Daniels K, Gillett W, Grace V. Parental information sharing with donor insemination conceived offspring: a follow-up study. Human Repro. 1:1 pp 1-7. 2009
- MacDougall K, Becker G, Scheib J, Nachtigall R. Fertility and Sterility, Volume 87, Issue 3, Pages 524-533. 2007.
- Lorbach, C. Experiences of Donor Conception. Jessica Kingsley Publishers. 2003. pg. 125
- McClelland S. Controversy over Sperm Donor Anonymity. In the Canadian Encyclopedia. Historica Foundation of Canada 2005. Available at http://www.thecanadianencyclopedia.com/index.cfm?PgNm=TCE&Params=M1ARTM0012412. Last accessed May 12, 2008
- Hamilton R. Open Parents, Closed System. In Voices of Donor Conception, Ed. M. Morrissette. p. 50. 2006 9 Ibid. p. 48