Anita Rao 0:00
I turned 35 last year. And as you may know, this milestone can be a weighty one for people with uteruses. It's practically impossible to avoid discussions about fertility and parenthood. But there was one conversation that I had recently that stood out among the rest. It was with my friend and colleague, Liz, whose own journey since turning 35 has taken some unexpected turns.
Liz 0:23
When I started trying to get pregnant, I found out that I was already going through menopause. It's kind of unusual, but it happens to about 1% of women and I'm in that 1%. So using an egg donor is really the only way that was recommended to me if I want to get pregnant.
Anita Rao 0:49
As Liz started looking into the world of egg donation, she was taken aback by a few things. One, how taboo it is to use an egg donor, even within communities navigating infertility. And two, just how much information she could access about the potential donors.
Liz 1:07
You obviously find out their race, their height, what they looked like when they're a baby, when they're an adult. But also you can see their SAT scores, what sports they played in high school or college, what they consider their perfect day, medical history for their entire family and extended family. It's kind of like looking at a dating profile, but, like, the most intense dating profile you've ever seen. And instead of picking someone to go have a drink with, you're choosing someone to make a baby with.
Anita Rao 1:46
Talking to Liz about this process from her end made me so curious about the donor experience. Who decides to donate their eggs and why? How do they feel about being judged on something like their SAT score? And why is so much of the egg donation industry shrouded in silence?
This is Embodied. I'm Anita Rao.
The first American child conceived via donor egg was born in 1984. Since then, egg donation has become a multibillion dollar industry in the U.S. But we don't often hear about the experiences of egg donors.
Julie Ventura 2:25
Hi, guys. So this video is gonna be a little bit different. If you're just here for nail tutorials, please look away now. So a couple months ago, I was an egg donor for my best friends. And I never thought I would ever do anything like that in my life. And I didn't understand what it would feel like, the emotional side, the physical side, all of that.
Anita Rao 2:46
That's Julie Ventura, telling her egg donation story in a 42-minute-long YouTube video she uploaded to her channel in 2017. Julie highlights the nuance and complexity that defines the donor experience. She is super candid and super thorough. But I was still left with a lot of questions — ones that I got to ask her directly.
So your egg donation journey started in late 2016, two of your closest friends, a couple named Eric and Adam, approached you asking you to be their egg donor. Can you take us into that conversation and how you initially reacted to their request?
Julie Ventura 3:23
It definitely took me aback. I knew they had been talking about starting a family, and it just wasn't a thought in my mind that they would even consider me. And I was like, "What?" I could not even comprehend that I was at the top of the list. And the only feeling I felt was, even though I hadn't done research, I was like, "I just want to help them have a family." Like, that was my only thought in my head really.
Anita Rao 3:50
So what were some of the factors you weighed as you were making that decision, given that you're going from never having entertained this idea before to now being faced with a really personal request?
Julie Ventura 4:01
I made it a point to not really involve too many people in my decision-making because I didn't want to be affected — I didn't know what anybody would think about this. And I knew that this was a very personal decision. And, you know, the main thought was that I never thought about having children. I never had a maternal instinct, it wasn't something that I have always wanted or dreamed of. And I knew from that aspect, I would be kind of the perfect person to not be attached to the kids and, or not, you know, think I was going to have those feelings. That was something that I felt was the most important. And then, you know, you start going down the rabbit hole of research and I still feel like there just wasn't a lot back then. So I couldn't really tell what the health implications were, or what the process really was like or anything like that. I did try to make this decision all on my own and — and that's what I did yeah.
Anita Rao 5:10
Deciding to donate your eggs is step one. Then comes the screening phase. A combination of psychological and medical evaluations that help fertility clinics decide if you're a suitable candidate for retrieval. Each clinic has its own requirements, but they generally want you to be between the ages of 21 and 34 and in good overall health. If you're deemed ready to donate, you likely have to sign a contract that outlines everything from a timeline for retrieval, to compensation details, confidentiality and parameters for future contact. For Julie, the contract was a necessary formality. But the fact that she knew the intended parents and knew how they plan to approach topics like disclosure meant a lot to her.
Julie Ventura 6:00
I think a lot of that had played into how comfortable I was with this decision, because they always wanted to make sure from day one that the, the girls knew exactly where they came from. And they're 6 years old now. And they, they know where they came from. They have lots of questions all the time. You know, they're still very young, they don't understand it, but they knew exactly what they were going to do when questions arise. They didn't want to hide anything. I feel like that's where a lot of kids do have, you know, struggle with identity problems. And, yeah.
Anita Rao 6:41
So compensation is legal in the U.S. for egg donation, but the amount can really vary greatly. I'm curious about what you thought about the compensation piece and how that conversation went with Eric and Adam.
Julie Ventura 6:54
Yeah, they did ask me if I would want any compensation. And my first and only thought was, "No, I don't need anything other than, you know, help getting through whatever days of work I'm gonna miss and, you know, treat me to as much food as you can, and be my best friends forever." But I wasn't looking for compensation for it.
Anita Rao 7:14
You mentioned earlier that you made this decision without really talking to anyone in your life, you wanted to keep it really personal, give yourself time to think it through. When you did start talking about it, how did that go? How do people respond?
Julie Ventura 7:27
Yeah, not so well. The first person I talked to about it was my mother. And I was dumbfounded when she had such a negative reaction at first. She was somebody I thought I could lean on for absolutely anything. And I totally understand her perspective now. She was thinking, "These are my first grandkids and they're not mine." Eventually, that became neither here nor there. And she is so supportive, and so happy and so loving, and got to you know, meet the girls multiple times, and she's so happy that I did this and proud of me. But the initial reaction was difficult, and I was not really able to get any support from her going through the process, which was really hard.
Anita Rao 8:10
How about your friends? Did they react differently?
Julie Ventura 8:14
I found out very quickly that a lot of women feel it's wrong to donate your eggs, and it's yours and you shouldn't be giving it away. I don't know if it was because it was a gay couple. I'm not really entirely sure what everyone's mindset was, but in comparison to the reaction the surrogate got, the surrogate only still to this day gets so much praise. "Oh my gosh, what a beautiful thing you did for them." And I get the complete opposite reaction, so often, still, to this day, seven years later, almost. So just a lot of negativity. "How could you do this? How could you give part of your body away? Why would you help, you know, a gay couple?" Like, but the surrogate is always praised. And, you know, "What a blessing she brought to the world."
Anita Rao 8:59
As you went into this process having that in your mind, did it ever, like, give you hesitations? Like, did you ever want to stop or turn back?
Julie Ventura 9:09
No, I absolutely never regretted the decision. I think it's an amazing — I still stand by it. I think it makes me a better person and, for you know, people to be negative towards it, I feel like it just shows a lot of people's true colors. And it did help me figure out who were my true friends and who weren't, and who were people that I wanted to be associated with and, and the opposite. So I never had any regrets.
Emily Arocha 9:46
I chose to become like donor because I truly just wanted to help out those who wanted to become parents and may not naturally have had the chance to do so. Egg donation was something that I looked into for a very long time, and it feels like a very big honor and privilege to be able to finally live out my dream of helping others. My donation experiences have all been great. I have been able to connect with my recipient families and they will always hold a very special place in my heart.
Emily Derrick 10:17
I am 38 years old and my first egg donation was when I was 21 years old as a senior in college. I went on to pursue five more egg donations because I was working in the field of fertility at an egg donation and surrogacy agency after I graduated from college. And just working with those people and seeing how badly they wanted to have a baby and have a family of their dreams really just compelled me to do all that I could, literally. I still feel like it was a really beautiful thing for me to do. I know that I greatly impacted, especially these women's lives, in a really positive way.
Anita Rao 10:59
That was Emily Arocha and Emily Derrick, members of We Are Egg Donors, an online community and support group for egg donors all over the world. We Are Egg Donors was founded in 2013 by three women who were all looking for community and for a space to work through their thoughts and questions about their egg donation experiences. One of those founders is Claire Burns. She's a Canadian playwright, actor and advocate who donated her eggs in 2003. Claire's donation story started in her college library, when she saw a paper flyer tacked to a bulletin board.
Claire Burns 11:42
I think it said something like egg donor wanted, there was you know, a pixelated image of a baby in a stork's mouth. And then there were little tear-off tabs like how you'd see, you know, on your telephone pole, the — advertising a painter in your neighborhood. And so I tore off one of the tabs and I emailed the contact information there and I reached out and then they put me in touch with the clinic.
Anita Rao 12:06
So that was the recipient mother. And then she connected you with a clinic in Toronto. And I want to hear about this application and screening process. We've heard people refer to it as kind of filling out the most intense dating profile you've ever filled out.
Claire Burns 12:19
Yeah.
Anita Rao 12:19
Talk to me a bit about your experience. What are some of the questions you were asked and the things you had to submit?
Claire Burns 12:24
Yeah, so it was like my full family medical history. So a lot of questions around grandparents and genetic diseases. Then I had to fill out more of what we would call like a social questionnaire, which was like, "Oh, what did I like to do when I was five? Like, did I like to play or play an instrument or sing?" And then there was more of like a psychological evaluation with a counselor where she asked me questions like, similar to the ones that Julie was talking about. So, you know, "What would you do if the child tried to find you?" Like, those kinds of things. And then there's medicals, like actual physical medical tests. It was fairly rigorous, although, you know, I could have lied at any stage. And for, as far as I know, they never checked my background or [laughs] any of the answers against anything else, you know?
Anita Rao 13:16
Oh, that's interesting. So donation obviously looks so different from country to country, it's regulated really differently, the process is different. You were going through it in Canada, and at that time that you were doing so it was legal to provide compensation to donors. Those laws changed quickly as you were going through your process. But what were your expectations for compensation as you went in? And how did it go to navigate that for you?
Claire Burns 13:41
Well, it's interesting because I was 20 when I started the process. And I'm not sure about the people listening, but as a 20-year-old woman, I wasn't very financially confident, I guess you could say, literate. And so I understood that there was going to be compensation and when I worked with the clinic, the representative from the clinic told me that they would be writing me a check at the end of it. I never really negotiated what that sum would be. But then, halfway through the process, the federal legislation passed where compensation was no longer allowed for egg donors. So I was told by the clinic that they couldn't have anything to do with it or else they could be fined or prosecuted. So then I was left to negotiate the sum with the intended parent. And this was like, the internet was really in its nascency at this time. I think I was asking Jeeves questions around egg donation and so I really didn't know how much to ask for. And I asked her for $4,000. And she said, "Yeah, okay." And when I was upstairs getting my eggs retrieved, she met a friend of mine cloak-and-dagger style in the lobby, like, my friend was wearing a red hat and she was carrying a black umbrella or something like that. And she handed my friend a paper bag full of $4,000 in cash.
Anita Rao 14:58
What?
Claire Burns 14:58
Yeah.
Anita Rao 14:59
Wow. Wow.
Claire Burns 15:00
Yeah, mhmm.
Anita Rao 15:01
So there's obviously so much gray area in how things have transpired since the law was passed. Like, at that time, it seemed like it was really going to be a strict ban on compensation, but that hasn't really been the case. It's been pretty gray.
Claire Burns 15:15
That's correct.
Anita Rao 15:15
What are your thoughts on whether or not donors should be compensated, and how much?
Claire Burns 15:21
I think women should be compensated for their eggs. Everybody else in this industry is being paid, the doctors are being paid an extraordinary sum of money for the service that they're providing to the parents. So why shouldn't the person who is providing the actual, you know, item be paid for it? Now in the U.K., and Australia, they have different mandates where they cap the compensation, right? Whereas in Canada right now, basically, we can't be paid. But we can be compensated for time lost at work, we can be compensated for travel. And I think this is still pretty gray, because a lot of the times the people that are donating their eggs, myself included, kind of exist in a shadow economy anyway. Like, when I donated my eggs, I was 20. I was working in a bar at night, I didn't have to take any time off work. I didn't have to travel anywhere, I walked to the clinic. So I don't think that Canada has hit the nail on the head. But I also think that, to be honest, I think the States is just wild how much people can get paid down there. And I'm not sure that actually is ethical, because the financial compensation can be so great. That can be a coercive factor towards women donating again and again and again. And we don't really know the long lasting effects of egg donation on a woman's body. So.
Anita Rao 16:43
Yeah. Everything I've heard about egg retrieval from friends who've done it makes it hard for me to imagine going through that process multiple times. It's intense. You're self-injecting medication several times a day over a few weeks to stimulate your ovaries to produce and mature multiple eggs. You also have to frequently visit a clinic for blood draws and ultrasounds. Then comes the so-called trigger shot, which finalizes egg maturation, and gets the eggs to release from follicle walls. Thirty-six hours later, you're ready for anesthesia and your retrieval surgery, where a doctor inserts a probe with a small needle into each of your ovaries through the vagina and use suction to pull out the eggs. The procedure usually takes about 30 to 60 minutes. This whole journey for Julie was more physically uncomfortable than she expected. She hated giving herself shots and got increasingly bloated as the days wore on.
Julie Ventura 17:45
Almost towards the end where I was going to start heading into the retrieval process, I was told that instead of one of the intended parents wanting to fertilize the eggs, both of them did. And so my process was pushed much further than typically that clinic does. And that was a lot of strain on my body. I think I would have had an easier time with the process if I didn't get pushed out longer and pumped up more with hormones and, you know, to make more eggs, so there was enough for both of them to split it and get a good chance of fertilization on both ends. But I would say the recovery process after the retrieval was definitely the hardest thing for me. I did have not a lot of support from the clinic afterwards. And I did end up having internal bleeding for about six weeks, which is not a typical experience. So I don't want to, like, scare anybody from from doing something like this. But I think it's just really important to make sure you're paying attention to your body and taking care of it and making sure the doctors are aware of what's going on.
Anita Rao 18:52
Yeah, Claire, I mean, you were touching a bit earlier on reflecting on how you maybe didn't feel as prepared as you wish you would have going into the clinical experience. Can you talk about some of the things you wish you'd known before you donated?
Claire Burns 19:07
Sure. I mean, when I met with the doctor about becoming an egg donor, he told me that there's no side effects to this, that there's no long lasting anything. What he didn't tell me was that there are no known side effects. Because, you know, we've never studied this. So I feel essentially that I was lied to by the doctor, and I'm so sorry Julie to hear about your post-retrieval experience. It's terrible. And I think I had a fine experience and Anita in terms of my retrieval, I, I didn't swell up like a balloon, like, it, was okay. But I think, you know, running We Are Egg Donors, and watching the comments come in through the secret Facebook group we have. I mean, eight to 12 eggs is the norm, is what should be retrieved. And we see upwards of 65 to 80 eggs being retrieved at some clinics. And I think just as a blanket statement, I don't think that the industry is giving women enough information for them to make an informed decision a lot of the times. Not in every case, but in a lot of cases.
Anita Rao 20:24
Julie, in the aftermath of donating, where did you turn for support and resources? Like, who was supporting you as you were navigating side effects and moving into this next phase?
Julie Ventura 20:36
You know, I wish I had found We Are Egg Donors back then, because I felt it was a very lonely process. I didn't feel like I had much support at all, other than, you know, Eric and Adam, my best friends who I was donating for. And, you know, it's not easy for them to relate as men. So I really was just in the depths of the internet looking for things but just not finding a lot and I really just didn't have much support honestly.
Anita Rao 21:21
Claire, I mean, you donated your eggs, you chose to keep it open. I'd love to know a bit about what an open donation means and why you made that decision.
Claire Burns 21:31
To me, what I understood an open donation to mean was that the child can contact me after he turns 18. And I do know that there was a child conceived and born. However, I've been trying to update my contact information with the clinic and with a lawyer who I worked with for the past two years, and can't get a response, can't get anybody to answer the phone or confirm that they've updated the information. It's not legislated here that the clinics have to keep that information on file and provide it to the child or the parent. Really the — I have to say the donor-conceived person in this, I think, is the one that loses out the most. I mean, sure, I would love to someday meet him if he was interested. But what if he wants to meet me and he feels like he has no recourse? And that's where I think that the system needs to improve.
Anita Rao 22:28
I'm curious about this moment, because obviously with at-home DNA tests and the ability for people to kind of go online and see who they might be connected to, this idea of donor anonymity has kind of been blown up in a lot of ways. I'm curious what you think about that. And you mentioned kind of wanting to advocate for donor-conceived people, like, what would a better landscape look like?
Claire Burns 22:51
I think a better landscape would be opening up files, like, allowing donor-conceived people to access their files to see who their donors are. Right now, they have the same rights as, you know, adopted kids had in the 60s and 70s, where those files are completely closed to them. You know, one way that you could do that is you could put the donor on the birth certificate — a lot of people are against this. Or you could have a national registry, which I think the registry is a great idea.
Anita Rao 23:19
What do you see as some of the most important steps in better advocating and better centering egg donors in this process moving forward?
Claire Burns 23:27
I think we need to think about patient-centered care with egg donors. Oftentimes, egg donors are treated as a cog in the machine, you know, that's providing the item or the thing that you're selling. And I think we need to think about egg donors as people. We need to think about how we're treating them. Even as simple as how we're responding to them via email, how we're streamlining their experience at clinics, how we are treating them medically, to make sure that they're not overstimulated. And how we're making sure that we have, you know, a good system in place so that we can track egg donors and we can track medical issues that come up later in life. I think there needs to be more money into research in women's health, and I'm sure we can all agree that that's entirely lacking over the last hundreds or so years. So, yeah.
Emily Arocha 24:24
One thing that I do wish I would have known before becoming a donor is just how mentally and emotionally tolling the process can be. I struggled a lot with body dysmorphia for a while after all of my cycles. And I think just because the medications and the hormones take over and you truly just become unrecognizable to yourself for a little while. I, however, don't regret becoming a donor at all and it's changed my life and who I am for the better. And I feel extremely grateful to be able to be on this journey.
Emily Derrick 25:02
I hold a lot of guilt now. And it's not about donating, I still think that it was a really beautiful thing to do. The guilt that I carry is that now I know better. I have come to find out that the experience isn't always a positive one for the donor-conceived people, the result of my donations or donations in general. So I'm trying to educate and provide support to recipient parents on their attorney as well. And I know that for a lot of donor-conceived people having contact even just for medical reasons with their donor can be really, really important for them on an emotional level. And I wish that I had donated to people that I knew or wanted to have contact with me, that I knew or going to tell their children that they were donor-conceived, because that is best practice. And I don't have any control over that.
Anita Rao 26:15
That was a bit more from Emily Arocha and Emily Derrick, two members of the We Are Egg Donors community you first heard from a bit earlier. A lot of egg donors are told that the risks for the procedure are minimal. But there are really few studies to pull from to support that claim. A medical anthropologist named Diane Tober is working to collect more information on donor health and has done some digging into one of the most common complications from this process, ovarian hyperstimulation syndrome or OHSS, which causes the ovaries to swell and leak fluid into the abdomen. Her studies indicate that the risk for severe OHSS can go up when more eggs are retrieved. Diane is one of several researchers trying to better understand egg donor experiences. As is Daisy Deomampo. Daisy is an associate professor of anthropology at Fordham University, who has been studying race and value in the egg donation industry with a focus on Asian American communities.
Daisy Deomampo 27:17
So compensation varies enormously. The fact that one person might get compensated maybe three or $4,000, and another might be offered 50 to $75,000, is of great concern. I've interviewed many women who were offered fairly large sums of money and acknowledged afterwards that they wouldn't have done it if they hadn't been offered that. So the large sums of money in a context in which there's very little regulation, there's really essentially no regulation, has created this kind of context in which a lot of women are feeling like they can't say no. But it also has this additional effect of reinforcing kinds of social hierarchies and values that we attach to certain characteristics. So what happens is people who have what are defined as particularly desirable characteristics in the egg donor market — they might identify as having a certain racial or ethnic background, or having had a certain level of educational attainment, or they went to a certain kind of school — people are willing to pay more for that. I think there's maybe two of the trends that are really important to pay attention to are how large amounts of money can, you know, sort of function as a kind of coercion. And how they also serve to reinforce, in a very troubling way, a kind of value that we attach to many characteristics that aren't even really embedded in our eggs or our genes.
Anita Rao 28:36
Talk to me more about that. You did some ethnographic research that included conversations with medical providers and clinics. What did you learn from them about the things that intended parents are weighing when they consider a potential donor and which ones weigh most heavily?
Daisy Deomampo 28:52
So in the context of Asian American egg donation, but I would say too in the context of egg donation more broadly, and the way the industry works in the United States, race and ethnic identity are probably one of the most important factors. Kind of at the top of the list that intended parents might weigh. For a variety of reasons, they might be looking for some kind of connection between the intended mother or the parent, they might be looking for someone who they believe would maybe create a quote, natural fit in their family. At the same time, many families might be looking for some kind of racial or ethnic identity specifically because of cultural concerns around desire for a kind of racial purity, for example. So I interviewed women who knew that their identity or their ancestry has been quote, for example, 100% Han Chinese. I interviewed a woman who kind of volunteered that information to me, because she knew that was something that was valuable on the egg donor market. And so it's these kinds of ways in which we see troubling narratives around racial purity overlapping with genetic inheritance.
Anita Rao 30:00
How does this play out in the front end of the process in terms of what donors see? I know you've looked at advertisements across the country and what they say what they don't say, what are some of the trends that stand out to you in terms of how race is talked about?
Daisy Deomampo 30:15
So this is where we start to see the seeds of that planted, right? So a college student or someone who might be looking for work on Craigslist, or whatever it might be might come across an ad that says specifically they're looking for someone who identifies as full or 100% Chinese. Or someone who is Japanese, or someone who is Korean. They're seeking someone with a very specific kind of racial or ethnic background. These are the — tend to be the eggs that are most highly valued, right? But those same ads will also look for someone who has, at the same time, maybe an Ivy League education or played an instrument or had perfect SATs. So there's a kind of search for what some have called maybe the perfect or the ideal egg donor. And many of the women that I interviewed understood that that was part of the process of them having to kind of market themselves in this way. I interviewed one woman who said that she knew that, that she needed to be highlighting certain aspects of her educational background or her, her family background while maybe de emphasizing others. And that might also mean that donors, again, are consciously kind of reinforcing this kind of flawed and troubling idea of racial purity by saying, "Oh, I have, you know, 100% Chinese ancestry."
Anita Rao 31:35
We've been talking about the lack of a single federal approach to egg donation in the U.S., which leads to a lot of variance in what donors are compensated, how their process goes, whether or not their facility regulates itself. What things have stood out to you in conversations with donors about how well they felt like their health needs and interests were taken care of in the process?
Daisy Deomampo 31:59
I think again, you know, Claire mentioned this earlier, there are certainly many women that I interviewed who had perfectly fine experiences. They felt as if their health, you know, concerns were addressed, and they had fairly smooth procedures with minimal post-retrieval side effects. I think what we need to pay attention to are the cases in which women are finding that their protocols, for example, lead to the retrieval of 40, 50 or more eggs. Where they experience, you know, months or years after the fact some long-term side effects that have affected their own fertility. What I have found in my own research is that this often overlaps with those cases in which women donated multiple times beyond what the American Society of Reproductive Medicine recommends. So women who've donated 10, 11, 12 or 13 times. I have interviewed women who maybe donated twice, but received $75,000, you know, or $85,000, over those two donations and regretted it afterwards, because they're now experiencing what they understand to be related to those donation experiences is, you know, sort of problems with it — infertility, endometriosis, and now needing to go back to IVF to try to have their own children. And so those are some cases in which I think needs to be sort of spotlighted so that we can understand all of the different experiences that people have as a result of kind of the lack of regulation and the kind of ethical concerns around compensation. And definitely around how risk and — is talked about, right? And how fully informed people are when they're giving consent.
Anita Rao 34:03
Embodied is production of North Carolina Public Radio-WUNC, a listener-supported station. If you want to lend your support to this podcast, consider a contribution at wunc.org now. Special thanks to Emily Arocha and Emily Derrick for contributing to this week's show. We appreciate you.
This episode was produced by Gabriella Glueck and edited by Kaia Findlay. Paige Miranda also produces for our show. Skylar Chadwick is our intern, and Jenni Lawson is our sound engineer. Amanda Magnus is a regular editor and Quilla wrote our theme music
If you have any thoughts after listening to this episode or a story of your own that you want to share, we would love to hear it. Leave us a voicemail in our virtual mailbox, SpeakPipe. While you're there, you can also suggest any topics you want us to explore in the future.
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Until next time, I'm Anita Rao, taking on the taboo with you.