Breaking Taboos: Starting a Conversation Between Egg Donors and Donor Egg Recipients

by Leah Campbell

Recently, I made what some would call a “bold choice” by trying to find the families who received my donated eggs. I wrote an article titled “To the Parents Raising My Eggs,” which was meant to reach out to those families and hopefully encourage them to contact me.

To give you some perspective, I donated my eggs seven years ago to two different infertile couples. Both donations took place within six months of each other, and at least one of those couples was able to conceive as a result. But less than six months after my second egg donation cycle, I began to experience complications. I was eventually diagnosed with an aggressive case of stage IV endometriosis. I went from being perfectly healthy to racking up tens of thousands in medical bills as a result of my condition. I needed 5 surgeries and ran through the gamut of other treatment options. At the age of 26, less than two years after I had last donated my eggs, I was told my fertility had become a “now or never” prospect. I could use donor sperm (as I was still a single woman) and try to conceive immediately, or accept the fact that I would likely never carry a child. I shot for the moon and attempted IVF twice, but both cycles failed. Unable to endure any more heartache or financial strain, I forced myself to walk away from fertility treatments and begin accepting the fact that I would never be pregnant.

Today, I am a 31-year old single mother by choice to a sweet and funny toddler who came to me through the miracle of adoption. I am also a vocal member of the infertility community, telling my story and interacting within that community for almost 5 years now.

My decision to pursue breaking donor anonymity has quickly gained traction, with the original article having been viewed to date by almost a quarter million readers. Many have been willing to help me in my search by sharing that article. I remain hopeful that any day now, it will reach the eyes it was originally intended for.

I have received emails from past donors and recipients alike, all encouraging me in my goal. Several of those egg donor recipients have told me that while I was not their donor, they would be honored if I had been and would have loved to have a relationship with me.

However, my choice to reach out to my anonymous egg recipients has also made some people very uncomfortable.

Mainly women in the #DEIVF (“Donor Egg IVF”) and infertility communities who somehow feel threatened by this effort of mine and who have made those concerns known through the wonders of Twitter and “sub-tweeting.”

Some of these women I have known for years. They are women I have supported and who have supported me in efforts to conceive. Women I respect. Women with opinions I have always cared to hear. So to see how quickly they were willing to turn on me was disheartening at best.

But it also made me realize how necessary a conversation between egg donors and recipients has become. There is clearly a disconnect between these two groups that should not exist given how intimately we are otherwise entwined.

There were those who seemed concerned that my search was an invasion of privacy inflicted upon the two families I donated to. In my original article, I was very careful not to provide any identifying information about those families or the agency I donated through, specifically because I did not want to inadvertently “out” those who did not want to be found. Yet the criticism has been that because I made this search public instead of leaving it up to the agency, I am going too far.

Unfortunately, the expectation that a donor should rely solely on the agency in a matter such as this highlights an understanding of agency interactions purely from the side of the paying customer. What recipient families may forget is that donors are often the commodities in that transaction, and as such, their agency experiences are much different from yours.

One issue donors routinely deal with is being dropped off their agency’s radar once they make the decision not to donate again. Where they previously had responsive coordinators and people jumping to answer their questions along they way, the post-donation period often involves a whole lot of unrequited phone calls and e-mails that never get answered.

That is exactly what happened to me. Following my last donation and subsequent medical complications, I attempted to contact my agency in order to request they share my updated medical information with the families that received my eggs. I knew the first family I had donated to had conceived twins, a boy and a girl, and I wanted them to be aware of my diagnosis because endometriosis is a hereditary condition.  I didn’t hear back from the agency for 6 months though, and when I did; it wasn’t to inquire about my condition, but instead to ask if I would donate again. It became clear they had never informed my recipient families, or even bothered to update my records with this new information.

An added blow was that my agency was extremely unresponsive in helping me to gather my donor records for my IVF cycles. After multiple ignored attempts, I ended up having to track down my own medical records through the clinics where I had donated, resulting in a hefty bill just to get those records sent to me.

The one positive that came from this experience was that I did receive an update from my original recipient family when they were finally informed of my condition. They were hoping to start trying once more, and had wanted me to be their donor again; their hearts set on genetic siblings for the two children they already had. Upon learning of my diagnosis, they kindly offered to pay for a split cycle, guaranteeing me a set number of eggs if they could just have the remainder. Ultimately, that was not a plan my doctor was comfortable with. Still, when I declined, they sent a heartfelt update, thanking me for all I had given them, wishing me luck on my treatment attempts, asking if I would please update them if I was able to conceive, and even offering to send me photos of their twins – if I was interested in seeing them. This communication was sent to me via the agency, and even though I replied immediately that, “Yes, please, I would love to see pictures!” I never heard anything again. I made multiple attempts, but the agency went radio silent on me.

I still have no idea what happened. If the agency had told me the family had changed their minds and was no longer comfortable sharing photos with me, I would have ceased pursuing contact. But that’s not what happened. And given the warmth and openness they seemed to express in their last letter to me, I truly believe they would be open to such contact.

But when the agency is completely unresponsive, what options does a donor have?

My situation is not unique. I have spoken to several donors who have had similar experiences, with communication ceasing by their agencies once their donations were complete. I also heard from a recipient who contacted her agency after her baby was born, wanting to open a relationship up with her donor and send pictures. The agency told her that wouldn’t be possible, stating that donors agreed to donate on the basis of anonymity and agencies were unable to initiate contact because of that agreement.

The thing is, despite all this talk about “protecting” the egg donor’s interests, I have never spoken to a single donor who would be opposed to hearing updates about her recipient family. Ever.

On the other side, egg donors are told that recipients will likely never want to meet them. This is true in some cases, but certainly not so in all. Anonymity is sometimes enforced not at the behest of the donor or the recipient, but by the fertility businesses that stand to benefit from these walls.

All of this brings us back to the appropriateness of my search. I genuinely hope to hear from those families I donated to and it would be mean the world to me to at least receive an update and photos. But I’m not pushing to meet them. I’m not advocating to be a part of their holiday dinners or to have weekly Skype sessions with them. In no way do I want to force myself upon this family or do anything that isn’t in the best interest of them and their children.

I just… I’m hoping to know them. To maybe have a chance to learn more about who those kids have become, and to get to know who their parents are as well.

Because it isn’t just about the children those eggs grew into. In a way, it is also about the woman I felt connected to all those years ago when I first decided to donate.

It is about a kinship that was only increased by my own infertility, when I could finally understand firsthand the grief she had experienced. I wonder about her too. About who she is. About her struggle. I wonder sometimes if we would have been friends in another life. Believe it or not, I actually care about her, about them, a great deal. Perhaps more than makes sense, given that I don’t know a thing about them. But I wouldn’t hate having the chance to get to know them, in much the same way I have gotten to know many of you within the infertility community over the years.

Realistically though, the ball is entirely in their court.

So what is so wrong with that? And is it really so crazy or wrong for me to desire some sort of connection?

The other big upset regarding my original article had to do with the terminology I used, particularly the fact that I referenced “my eggs” more than once. I honestly didn’t know how to respond to that, mostly because it had never occurred to me not to use the exact same terminology I, and countless other donors, have always used when discussing our egg donor experience. Those were my eggs. They came from my body. I injected myself with hormones in order to produce those eggs. And I submitted myself to anesthesia so that those eggs could be extracted. Everything about then referring to them as “my eggs” is accurate and true.

So why should I ever have thought to refer to them differently? No matter who the audience was?

For whatever it is worth, I acknowledged within the article that once they evolved beyond eggs – they were no longer mine. And I don’t know a single member of the egg donor community who feels any kind of ownership over the children who were created by her eggs, myself included. But when I am talking about my experience, calling them “my eggs” is how I process my role. I can tell you with certainty that most members of the egg donor community routinely reflect back on their experiences using this same exact terminology. That is how we frame ourselves in the picture and understand the part we played. So the question then becomes, should donors be expected to censor how they view their experience when in the presence of recipients – or should the onus fall upon recipients to try to better understand what those words actually mean to the donor and how they are an integral piece of her experience, before telling her the words she uses to associate herself in that experience are wrong?

After publishing this piece, I was pointed in the direction of an essay that began circulating several years ago – written by Ruth Ragan, a former egg donor. It was titled “Where are My Eggs” and was composed 15 years after her donation. Earlier this year, an egg donor recipient wrote a thoughtful and compassionate response to Ragan’s piece. “Some Thoughts about Where are My Eggs,” by Ellen Glazer, touched on so much that I would love to see other recipients understand about their donors; an understanding that extends beyond terminology.

When members of the #deivf community try to dictate how donors discuss and process their experiences, they risk dehumanizing them and the role they played in the process.

Just think about that for a second.

Think about the power dynamics already at play in this situation and what it means to tell an “equal player” in the donor experience that the words she uses to identify herself within that experience are wrong.

Think about what it means if you are the one who gets to decide what that terminology should be, without even taking a moment to try to understand where that terminology may come from and what it means to her.

Granted, I believe an open discussion about terminology is probably long overdue. But I also think it is fair to acknowledge and remember the fact that donors play just as big a part in this equation as the recipient, which means that their terminology is just as “right” and worthy of consideration as yours when it comes to discussing this experience.

If we were talking about any other organ or tissue, the use of the word “my” would not be met as a threat or affront to the recipient.

If I had donated my kidney to a stranger and said, “I often wonder about the woman who received my kidney,” no one would bat an eye.

So when discussing the terminology here, we have to be honest about where that discomfort stems from. It isn’t just the words, but the underlying fear that comes with raising a child who is not genetically yours. This is a fear and discomfort I truly understand myself, as I am smack dab in the middle of a very open adoption – one where the word “mother” actually winds up being quite interchangeable, and where it is not uncommon at all for the woman who birthed my daughter to also refer to her as just that; “my daughter”.

But the thing about fear is that it doesn’t do any good if it goes unacknowledged or is painted as being something else entirely. And by accepting that fear for what it is and moving forward with an open heart in regards to the fears and complex emotions also experienced by the woman on the other side of that equation, so much good can be found.

For those potentially grappling with that fear and discomfort now, I just want you to know that I have yet to meet a single donor who has ever viewed her role as greater than, or even equal to, that of the actual mothers raising the children created by her eggs.

This is a very different situation from adoption, even though I keep drawing the parallels. We are all very aware of who the parents are here, and when we use the word “my” when discussing those eggs, it is never meant to discount or displace you. We all understand that those eggs go on to become children who have mothers and fathers who influence and impact them every single day, and we know that those children are not in any way ours. When we discuss our eggs, it is not to take away from everything you have created; it’s just how we frame ourselves, and our contribution, in that equation.

And this is maybe why we need to be discussing these issues. Perhaps it’s time that recipients become aware of what an egg donor experience truly is.

Because I can tell you, I have been on both sides of the equation. And while there is a growing understanding and compassion for the experience of infertile women, along with numerous resources to aid those women in their journey – the donor experience tends to be brushed under the rug and pretended away as inconsequential. When the reality is, it is anything but.

I do think of adoption a lot when I reflect back on my donor experience. Mostly because, as an adoptive mother, it is another situation I am able to frame myself in. I’ve come to realize that in much the same way birth mothers were marginalized in the past, it is often easier to picture egg donors as selfless women who gave without wanting anything in return and who have never looked back on their decision with regret.

Particularly for the recipients of egg donors, it is probably so much more comfortable to picture their donors as angels who provided this precious gift and then went on to live healthy and productive lives, perfectly content never truly knowing the outcome of that gift.

The problem is, egg donors are not flat characters who can be easily painted into and out of the picture of these fairy tales. Egg donors are dynamic women, each flawed and fabulous in their own ways. Their experiences and the reasons behind why they chose to donate aren’t always pretty, and neither are the ways in which their feelings may evolve over time in regards to their donations – particularly for the growing group of women who have gone on to experience infertility or health issues in a relatively short period of time after donating.

Egg donors are just as complex and varied as you, and their voices are no less important or valid in this discussion.

For years, agencies have worked to keep donors in the background, placing priority upon their paying customers, the recipients. There are still no long-term studies on the health outcomes of egg donation. Until recently, donors had no way to connect. No way of knowing if what they were feeling was normal, or even acceptable. And no way of gauging whether any resulting health complications they may have experienced as a result of donation could have been more common than they were originally led to believe.

It has only been with the creation of We Are Egg Donors that past and current egg donors around the world have been able to connect and share their stories.

And through these unprecedented conversations among egg donors, it has become clear that there is a lot that should likely change about the way egg donation is currently happening in this country.

There was a time when birth mothers were expected to remain off in the wings after an adoption. When their voices were silenced and they were told they had no right to any negative feelings they may have had surrounding the placement of their children. People preferred to believe that all birth mothers were simply selfless angels, that they never went on to experience any negative feelings or residual hurts surrounding adoption. It was far less comfortable to accept the reality; that many of those women were coerced into placing and spent the rest of their lives mourning the loss of their children.

Egg donation is obviously a far less complicated and emotionally fraught practice, and I don’t mean to make the comparison in such a way as to pretend that the connection to those donated eggs is in any way as intense as the connection to a baby who was carried for 9 months before being ripped away. Nor do I mean to imply that donors were forced to donate against their will, because in no cases that I have ever heard of does such extreme coercion exist. But there are lies that are told to donors along the way – often the same lies that were told to their recipients about this process. And there is manipulation that occurs in regards to targeting these young women who may not fully understand what they are signing up for at the time. And who, even if they do fully understand, are entitled to the changing of perspectives that comes with maturity – a maturity that most recipient parents have already obtained by the time they enter into their side of the egg donor agreement. We are talking about couples that are generally in their late 30’s, established in both their careers and personal lives, entering into anonymous agreements with young women in their early 20’s who may be more enticed by the large check being offered for their eggs than they are necessarily willing to admit at the time.

There is a difference in power dynamics at every level; age, wealth and status. To have an expectation that your donor fully understand what she is committing to in the same way you do at the time of her donation is short sighted. To lack compassion for the evolution of her feelings as the years go by… cruel.

So if it makes you uncomfortable to be confronted with the egg donor experience, maybe that’s a good thing. Maybe that’s the only way to gain a better understanding of all sides.

I’ve been around for a while. I’m a part of the infertility community. I know your stories. And I can promise you that the vast majority of donors choose to give their eggs with you in mind – with care and compassion for your plight. So maybe there is something to be said for educating yourselves on theirs as well.

I want to encourage you to look around this site, to read some of their stories. The good, the bad, the ugly. You will learn about a donor who flat out lied about her medical history, driven purely by the monetary gain promised. You will also learn about how her agency did nothing to really look into her background – a practice that is fairly common among donor agencies, despite how thorough they may be telling you their vetting process is.

You will hear from a donor in the UK who explains exactly why steep monetary compensation should not be a part of egg donation.

You will read about the experience of one donor who was actually sought out and found by the child who was conceived by her eggs, highlighting the fact that many donor conceived children do grow up to have questions about their donors.

You will read compelling evidence that egg donation may actually be quite harmful for young women.

And you will also learn that most egg donors don’t consider themselves mothers – not even kind of. So when we express our curiosity or our desire to know more, please know it is not because we want to take your place – it is simply because we really are curious. Most of us really do care.

Some of what you will read will fill your heart with warm fuzzies, while other pieces may be more difficult to digest. But all of it is real. And you will find that we have done a lot to try to understand your side of this equation, so perhaps it is time you get a view from our perspective.

Let’s have a conversation. Heck, let’s make it a good one. One where we all agree to have open minds and hearts. Where we possess the emotional maturity to accept that our viewpoint is not the only one that matters.

And where we are willing to take a risk and get to know what drives the thoughts, feelings, fears and experiences of the other side of the egg donor experience.

Because it may not be comfortable, but that doesn’t mean it isn’t right.

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Editor’s Note: Photos courtesy of Leah Campbell. The first photo is a professional headshot her egg donation agency had arranged to “promote” Leah as a marketable egg donor. Interestingly, featuring photos directly from her donor profile in the original article was met with some derision because many thought they seemed inappropriately “sexy.”

Well… we agree. Marketing egg donors as sexualized products — rather than real people — is… uncomfortable, to say the least.

For those interested, here’s a photo of Leah, living her life today, without all the hair and makeup and awkward sexy poses that were dictated by a professional photographer for her donor profile.

LeahJosie.jpg

About the Author: Living in Alaska, Leah Campbell has travelled the world and written extensively on topics relating to infertility, women’s health, adoption and parenting. A single mother by choice after a serendipitous series of events led to the adoption of her daughter, Leah is also author of the book Single Infertile Female. You can also find her on Twitter:@Sifinalaska.