Everything You Need to Know About Donating Embryos with guests EM*POWER with Moxi
We’re going to talk about donating embryos with three extremely impressive guests that are doing something to change the world for fertility patients everywhere with EM*POWER with Moxi. I’m honored to have Maya, Jen, and Gina joining me today for this conversation about everything you need to know about donating embryos.
Dr. Aimee: Thank you for joining me today.
Maya Grobel: Thanks for having us.
Dr. Aimee: Gina, you’ve been on before. I was so happy to have you on. Just the fact that that three of you came together as mamas on a mission — I love saying that, I might say that a few times — to transform the landscape of embryo donation in 2019 means so much to all of us. That journey that you each had and how that connected you through embryo donation, as you wanted to make embryo donation better understood, more inclusive, and more accessible paved the way for so many parents to be out there. You wanted to bridge the gap between reproductive medicine and child wellbeing in a way that has truly never been done before. I’m so excited to have you back on.
We’re going to talk today about everything you need to know about donating embryos. I’d love for you to introduce yourselves. Maya, why don’t you go first?
Maya Grobel: Thank you so much. That was a lovely intro. Do you want to be on our marketing team? I’m just kidding. That was a lovely intro.
EM*POWER with Moxi is an education company before anything else. We’re an organization that specializes in education, support, and building a community for embryo donation, because that’s what the three of us were really lacking when we were going through our own journeys.
I’m a recipient through embryo donation, I’m a parent, I have a 7-year-old daughter. I landed on embryo donation, like a lot of people, after literally everything else did not work. Embryo donation is not generally something that you wake up one morning and think, “That’s how I’m going to build my family.” It’s more, “I’ve done IUIs, I’ve done IVF, I don’t have eggs.” My sister donated eggs to me at one point. I couldn’t afford this, that, and the other.
I hate to talk about it like that because it really feels like this last choice, but I have this amazing human that wouldn’t be here without embryo donation and people who, like Jen and Gina, decided that with their remaining embryos they were going to give somebody else a chance to have a family.
We came together several years ago as mamas on a mission because all of us really needed a different way to engage in embryo donation and a different way to learn way about it. We all felt really alone and really confused.
Moxi Matching is our matching platform that is part of EM*POWER with Moxi. Moxi because you need a little moxie to pursue this in one way, shape, or form. We’re an inclusive and unbiased organization. The landscape of embryo donation generally hasn’t always been that way, so we really feel like it’s every individual’s or couple’s choice of what to do with remaining embryos, and a very specific and unique way to build a family, and people need to be educated to figure out if that’s right for them. We don’t push anybody one way or another, but it has worked for the three of us in a beautiful way.
I will let Jen and Gina introduce themselves. I’m also a psychotherapist in the field of reproductive medicine, and have been for a while. What else do I do? I made a documentary film. Actually, Aimee, you and I spoke on a panel. I don’t know if you remember this, in San Francisco years ago. I documented my journey, it’s called One More Shot. It was on Netflix, it’s now on Vimeo on-demand. That’s my scattered bio in a nutshell.
Gina, do you want to? Your bio is more impressive than mine.
Gina Davis: Not at all. We just come from different angles. I’m a genetic counselor. I’ve been in the reproductive medicine space my entire career. I started right after college, worked at a fertility clinic, and then went right to grad school and wanted to go into infertility. I just knew that. I was fascinated by all things infertility, I was fascinated by egg donation, I was just fascinated by how genetics could integrate with fertility.
Anyway, long story, but I was a genetic counselor at an academic medical center for years before I realized I was going to have my own fertility journey. It was real hard to shift mindsets and go, “I’m a patient now. How do I make my own decisions?” Working in the space for a long time, I knew what the options were. After a pretty serious fertility journey, we ended up doing IVF, and I stimulated really well, I made a lot of eggs.
During the stimulation, you feel like you’re winning the lottery. You’re like, “Oh my gosh, I know this could go differently, but this is going beautifully. I’m going to have so many eggs, and maybe that means a lot of embryos. I don’t know.” You don’t know if fertilization is going to take, and all of those things.
Through that cycle, I started thinking, “What am I going to do? Should we fertilize all of them, or should we not?” At the time, egg freezing was experimental, so we didn’t really have that option to freeze eggs. We decided we’re going to just go for it and see what happens.
Maybe if we do really well, we’ll have more embryos than we can use. What are we going to do with that? Maybe we’ll be embryo donors. To me, it was more of a “we could do that, maybe we could do that, that would be cool,” because I saw all sorts of families in front of me and I thought this would be cool. I thought it really just would be a cool experience, I thought it would be a fun way — well, not fun, but I thought it would be something that I could kind of pay forward, seeing all these experiences of families coming together in various ways and being part of that, and being part of it in a different way.
At first, it was a really simple “this is just a done deal, this is what we’ll do when we’re done.” The weight of that decision really started to make itself known to me through the years after we had our two children through fertility treatment. Then I started realizing it was a little bit more complex. I really started to take the voices of donor-conceived people into mind, and I really started to investigate what would this mean on the other side for the other family, how could we do this in a way that would align with our values and these people’s values.
I started really thinking about it, and I found that I didn’t have a lot of knowledge base to think about outside of the medical stuff. So, I found Jen. My partner Jen Vesbit is also a donor, and she’ll tell you her story, but she was doing a lot of writing and speaking on the topic, and I was like stalking her. I was like, “You are the only one talking about the vulnerability, all of the inside stuff that has to happen before you can embark on this journey.” I was hooked. I was like “we need to be talking about this, thinking about this, making decisions with all of these things in mind, and then being able to move through it and really resolve whatever decisions we made, we have to find some resolution in them.”
Once we actually met, and then I met Maya, we kind of decided we have something to offer that can really help people. We had decided to donate our embryos. I had already donated them before I met Jen and Maya. We donated half of them. There is one child from our embryo donation right now, and she is 3 years old. We have more embryos that we’ve been in the process of donating.
But, yes, it’s been a journey. Seeing this through the genetic counselor lens has helped me to shape how we make sense of this, sharing genetics, how do we make sense of all of this and families built this way. From that, I’ll let Jen tell a little bit about herself.
Jen Vesbit: Thank you, Gina. I always love it when you say you were stalking me because I was hoping somebody like you was listening.
My name is Jen and, in my 30s, me and my husband were diagnosed with male factor infertility. I came into the space of fertility treatments with no education about it. Embryo donation was not on my radar whatsoever when I went through IVF. After the first round of IVF, I had a miscarriage, and no remaining embryos. After the second round, I became pregnant with twins, they are now 10 years old, and we had one remaining embryo.
At that time, I would get the typical storage bill every year asking what I wanted to do with my one remaining embryo. Like I said, it wasn’t even on my radar. I’m sure I might have signed a form at some point, but I don’t even remember. As that storage bill kept coming in and I was in the process of raising newborn twins and then toddler twins, I thought a lot about what I wanted to do with this embryo.
In the end, we ended up donating in a directed / known way. We can talk a little bit more about that later. I sort of went off on my own and did a DIY job because my clinic was only offering known or non-directed donations, which is still pretty common with clinics, although we’re hoping that changes. The donated embryo is now a 5-year-old boy.
Going through this process, like both Maya and Gina have said, I felt really alone. Who else out there is doing this? Who is feeling things about it? I was in my own personal counseling. I’m a trained counselor as well, and a nationally certified counselor. I was actually getting my master’s degree in counseling as I was going through IVF and miscarriage and all of that. So, I just decided to turn my experience into, hopefully, education for people like Gina or anybody else that was just trying to navigate this with not a lot of support or information out there.
I like to say that EM*POWER with Moxi, what we’ve created is what I really wanted when I was going through the process. It feels good to be that kind of mama on a mission. I love that, Dr. Aimee. That’s going to be our new thing.
Dr. Aimee: Mamas on a mission, creating magical moments for people who deserve them more than ever, and in the most ethical way that also will prevent DNA bewilderment. Through the things that you guys are doing, there is going to be less confusion for donor-conceived people because, I definitely agree, it should not be done in an anonymous way. I do embryo donation in my program, but it’s an extremely high touch process. People get introduced from the very beginning, facilitated by a psychologist, just to make sure we’re all on the same page about what this means. So, I’m just so glad that you guys are doing this for people that don’t have access to a doctor like me.
What does the path to donating embryos look like?
Jen Vesbit: That’s a great question. I would say, number one, it’s extremely individualized. For some, it can be very straightforward. Some people might have received that early education and even have embryo donation in mind at the time of freezing embryos and going through IVF. They might know exactly what they want. Other people, the path can be winding. There can be some fears along the way, some unknowns along the way. There can be a lot of joy along the way. There can also be forks in the road and turns that you don’t expect. Gina can talk a little bit more about that.
I sometimes feel very lucky because we had one embryo, so it was actually a pretty simple donation process. A lot of people have more to think about when there are more embryos and they decide they want to donate because it does create several families and things like that. I think my answer to that question is it’s so individualized. If I visualize it, what I hope is that along the path there’s our education and support and everything we’ve put into place.
I’ll say one more thing. That is that the path doesn’t end at donation, assuming that’s what you choose. Sometimes a new path starts, and that’s when you really think about talking to children and all of that. That’s my answer to that.
Gina Davis: I wanted to echo that. The fertility journey, we like to think of it in terms of a journey, the fertility journey is one part of it for a lot of the people that end up donating their embryos. Then it’s like if you choose this pathway, you’re really just opening up another door. You’re opening up a new journey, and it’s different. It’s a different journey because if you do a known donation you’re involved in some way in somebody else’s family and get to experience that journey with them, too. It’s just a new dynamic that we’re learning how these relationships can work.
Because historically these things didn’t happen before, we didn’t have the technology for them to happen before, we were starting fresh and trying to figure out what those roles and expectations and boundaries and all of that are. But the pathway to donation can be very different. It can be very long or it can be very short, depending on how you decide to proceed and if you decide to know the other family during the process. I think Jen is absolutely right that it is very individual.
Maya Grobel: We created, kind of like your TUSHY method, an EMPOWER method where we really think about it can be very individual, but there are certain steps that we think are really important. The acronym is not TUSHY, although TUSHY is fabulous, it’s EMPOWER.
E is education. M is the mental health support where you’re really exploring what are the implications of this option, is this right for me. P is preferences for matching, and that’s really considering do I want to know the person very well, do I want to meet once, do I want just to create a consensual way to connect down the line and have children decide how we meet, do I want somebody near or do I want a little bit of distance, so those preferences come up.
O is obtaining medical clearance. That can come earlier. Obviously, you want to make sure that the person carrying can carry, and that the embryos are viable for being donated. W is writing contracts, so we do really help support the legal aspect of that. We have a legal advisor on our team as well that helps navigate that a little bit. E is the embryo transfer.
R is the relationship expectations and management. I think, like both Jen and Gina said, that it’s not just something that happens and then that’s it, we have children, we have families. It’s rare that people talk about the children of donors themselves. When you’re talking about embryo donation, you’re talking about full genetic siblings raised in different homes with different parents. All of the children involved have to be considered. Those feelings might change over time. A 5-year-old is different, as you know, than a 10-year-old, and their needs are different.
So, we are creating supports for families all along the way through the journey from “is this something that I want to do” to “I have a 9-year-old who is asking this, how do I answer that question,” so that we can really consider the family functioning and the long term family support and functioning and children’s needs at the forefront of all decision making.
Dr. Aimee: Let me just ask you then what are some of the psychological considerations for anyone freezing embryos?
Maya Grobel: One of the biggest things to consider initially, I think, is how do I conceptualize these embryos, how do I make meaning of not just my fertility journey but as someone who has remaining embryos? I’ll talk about the donor perspective first, perhaps.
As someone with remaining embryos, often that’s an unintentional consequence or result of IVF. Most people have just started on this path because they just want the family that they want. They’re not thinking about extra or remaining or anything else. Then having remaining embryos, and nowadays with PGT testing, knowing the sex of an embryo, knowing that a lot of doctors will give a percentage, like this has a 70% chance of becoming a person, then also having children from that batch of embryos, it changes for a lot of people.
In the initial onset of IVF, you can check a box that says, “I’ll donate those to science,” or, “thaw and discard,” or, “donate to another person or another individual.” Those are the basic disposition options. In the beginning, you might have one feeling, but then after going through it, and also how much it takes out of a person can really change.
If you have one round of IVF and you do it, great. But some people work hard and they do five rounds and they get these embryos. You feel like these are like gold, I don’t know what to do with these. Or they have children, and they can’t fathom, they see embryos as little babies, as girls and boys, or whatever else. Some people have specific religious, moral, ethical, whatever, different approaches to it.
So, the first bit I think for the psychological element is how do I conceptualize these embryos. Is it different or similar to how, if I have a partner, how my partner considers this? A lot of times, it’s a little different. How do I make meaning of donating my embryo? How do I allow somebody else to parent? Because once you donate your embryo, you are generally not a part of that decision making. Legally, you relinquish the custody and those rights to the recipient.
You have to be prepared for that. You have to be okay with navigating the different feelings. I think Jen mentioned just the sense of joy, and also sometimes there’s jealousy. Part of the psychological consultations that are a really important part of the early stages of a lot of third-party reproductive type arrangements is to have consultations as a donor. The way I work generally is you initially have with a donating person or couple to really talk through is this something that feels right, what does it mean, etcetera.
Then on the other side is the recipient, who generally, not always, has gone through some stuff, for lack of a better word, to get to the point of considering embryo donation. You have to be able to embrace and accept the genetics of other people.
Dr. Aimee: Embrace and accept, no matter what you get. That is so hard because babies have birth defects and babies can have developmental delays, and that’s going to be hard for a family who donated an embryo to potentially see that. Sometimes people want to put blame on other people. To have that come back to someone who donated an embryo, to feel like they’ve donated something that wasn’t perfect. Those are the kinds of things that people just need, and I’m sure you guys do this, but something that I share with people is you get what you get, this is your baby now, you have to be willing to accept whatever it is that embryo will bring you.
Maya Grobel: Yes. So much of that specific journey or process is just coming to terms. That’s true for one’s own genetics. Right? You never know what you’re going to get. We all have this expectation that we’re going to take the best parts of both partners, smash them together, and there’s this perfect human that comes out. That’s just not how it works.
I think for anybody who goes through fertility treatments, it’s such an intentional process. You come to parenting in maybe a different way than other people. I don’t know, I wasn’t another person, I only had my fertility experience. You really accept that our role and our job as parents is to embrace whoever this person is and give them space. It’s no one’s fault it’s not as cute or this, that, and the other. It’s getting out of the way a little bit of some of that.
Gina Davis: As a genetic counselor, I find that to be a really interesting question and thought process. I will say that experiencing it through seeing Maya raise her daughter and seeing other families, in fact my own recipient embraced their child, it’s a philosophical journey of what is it to be a parent. What is it to be a parent?
Yes, if you have that genetic link, there is part of you that might see yourself in a child in some various ways. But when it’s not there, it can be even more beautiful. I see Maya and my recipient kind of fascinated by their daughters in ways that I can’t. I can’t even separate myself sometimes from my own, I’m like, “They get that from…,” I’m already tracking it in my head from a genetics angle a little bit. I see the beauty in parenting from a place of this is the journey of the child that I have and my journey through life, and I’m just embracing them.
Of course, there are birth defects, there are developmental disabilities, there are things that are medically sometimes needing help with. That’s where I think genetic counseling and understanding as much as we can about a family history can help your child live their best lives. Should you find out they have learning differences, in the genetic family you learn about those things, that might help you to translate that to a better environment for your child and to take those pieces and create a home life that can help your child to thrive.
I feel like that’s something you don’t really learn though until you’ve been a parent for a while and you start to see the journey, you start to see the cycles that happen and how you mentally adjust and shift your dynamics. I feel like fertility patients on the front end may not really understand that and they’re like, “I don’t want to be in this position to make a decision about a disability or about any kind of genetic risk. I want clean.” I don’t know what that means even. If we take a step back and start to think about life through that other piece of that lens of we’re all here learning things and none of us are perfect, we all have our things, how do we thrive in the environment that makes sense for us?
But as a genetic counselor, I will say that there is a lot of that that’s like piecing out the parts that are genetic identity and relationship building based on common shared mutual understanding, that is based on mirroring of genetic traits, and then the part of it that is just a medicalization of “I can identify that thing so I can help with this treatment or this particular intervention.” I think it’s just an interesting space that we’re in right now, because we’re shaping it right now.
Jen Vesbit: I just wanted to echo that. We’ve been talking a lot about the children and the genetics and creating space for them to be who they will be. I want to bring that up to the adults as well, because the adults are the ones that are making all of the decisions. Although it’s not as much of a genetic conversation, one thing when you’re going through embryo donation in a known way is we really need to allow the adults space to be themselves, to change their minds. There’s so much fear sometimes in donors, “My recipient said they wanted exactly this. If they don’t follow through, then what does that mean?”
I’ve really valued meeting Maya as a recipient because it has taught me the other point of view. Where I was very donor focused before, and then you learn if there is a birth and they kind of pull away, that might not be about me, that might just be about them needing this time to be with their family and be a parent, and all of that. These conversations about leaving space for growth are for us adults as well as the children.
Dr. Aimee: Yes. I’ve had so many donor embryo experiences over the last 10 years. I’ll never forget one family who donated an embryo and they didn’t understand why the recipient family wasn’t messaging them all the time after birth. I said, “She just didn’t want to feel like your surrogate. This is now her family. She will come back.” And she did, and they have a beautiful relationship. But I had to set the tone from the very beginning that it’s her baby, her family now, let them enjoy their baby. She’ll give you the updates when she’s ready, but have no expectation, she doesn’t owe you any updates after the donation. You have to be okay with that as a donor.
Maya Grobel: You set the tone in such a beautiful way for your patients. Part of our work is we’re expanding out to really support clinics to be able to understand a lot of this stuff. Embryo donation is kind of last on the list in a lot of ways for clinics. Helping patients navigate the complexity of the different relationships, especially when it’s an open one or a known one, and understanding that the recipient might need a little time to establish themselves as the parent because there is a different type of conceptualization that happens. Is this my child? Does the child look like me? Will it feel like mine? There’s all of these worries on the recipient’s end. Different but also equally worried are the donors. Is the child going to look like me or my children? There are all these things.
I think part of our mission with EM*POWER is to normalize that all of these feelings exist. If we understand and have the support and the community to talk about these things, to just be upfront with what our deal breakers with a match. Sometimes we have to date our donor and recipient a little bit, and that’s part of our support. We write about this stuff, we’re sharing information, and we’re really creating a space that it’s normal that you might meet a couple of people and like them as people but not feel like it’s a genuine match for you, and that’s okay.
There are feelings in all of it and it is complex in different ways, but it also can be really cool and really interesting. You just have to be able to have space to be genuine and honest, and that’s a big part of that. I think clinics need the tools to be able to support their patients through that, and that’s what we’re trying to provide, a way for clinics to send people to us to help match, navigate, and educate, and then you can go to the clinic a little bit more prepared. I know it’s a hot mess at the clinics a lot.
Dr. Aimee: I’m sure you’ve also seen that if someone is in a heterosexual relationship and an embryo has been donated, the sperm provider side might think totally differently about an embryo donation than the egg provider side. It can be different for every donation. For every couple that I meet, I have some men that are like, “Sure, donate my embryos,” and some men that are like, “No, only donate if it’s a female,” or, “Only donate if it’s a male.”
I think couples need to definitely process that, because you don’t want to get through this journey and then, all of a sudden, you’ve worked so hard to find this great match, you think you had it, and you guys just didn’t talk enough to one another as a couple.
Jen Vesbit: I think that’s such a good point. When we were talking about the psychological aspects earlier, I was glad that Maya brought up that you might conceptualize it in one way, but your partner might conceptualize it in another.
I had that experience. My partner really wanted to donate to science. What happened is when we ended up donating in a direct way to a single mom by choice and she was having a son, I felt like I was experiencing all of the emotions on my own. Then my husband and I went to counseling, and I realized he has a lot of emotions, he’s just trying to be strong and not expressing them.
We can’t say enough how much getting support and learning things about one another in the process is essential really to going through this.
Gina Davis: Another thing that in my experience was a really positive thing is that the journey of going through this emotionally together for my husband and I has been actually really beautiful. The fertility experience itself united us in ways that we couldn’t anticipate when we went through it, but even this emotional journey of making sense of all of this now, to this day, still continues to be this part that is actually really enriching for our lives.
Even though it can be complicated for two members of a couple to come to a consensus on what they’re going to do, it doesn’t mean that it’s not going to happen that they come to a place where there is a real resolution. It can go another way as well, but it can be, and that’s why we want to provide a model for how this can work in a positive beautiful way that just really enriches lives.
Maya Grobel: I’ll just piggyback that. We want to make this also, I don’t want to say the word fun, but accessible. That’s a big part of what we’re doing. We’re going to have events, we’re going to have virtual spaces where couples can come and talk about he-said and she-said, and all of these things, but I think just really normalizing some of this stuff. We have little activities, like questions to ask your partner. Just stuff that it’s hard to think about.
The statistics from 2012, it was like 7.8 million people engage in fertility treatments, over a million babies have been born in this way. There are over a million embryos being cryopreserved around the world. There’s a lot of people who have remaining embryos. A lot of people. So, the fact that there isn’t more support out there is confusing. Or I should say that there isn’t more support that is very non-directive, unbiased, and inclusive.
Our foundation is that we believe that all people have a right to pursue parenthood, and those who have remaining embryos have a right to make decisions about them that fit for themselves and their families. Being a part of a community that can have a virtual event where you just kind of are up front and talking about it, it feels like, like Jen said, it’s something that we all wish we had in our dark fertility years.
Jen Vesbit: I wanted to add to that, there are so many other people also that are touched by embryo donation. There are mother-in-laws, grandparents, siblings, and all of these people. From the donor side, “Do I share what I’m doing? What will they think? Will they be judgmental? Will my mother-in-law feel like if there is a child born it is somehow her grandchild and she needs to put this baby in their will?”
The events that Maya is talking about we really hope to expand to broader family support. My mom, as a grandmother to my children, and then there’s the donated embryo, she might love to talk to another grandmother that is in a similar position. So, we really do want to expand it to the overall community, because it doesn’t just end at the donors and recipients and their children.
Dr. Aimee: You’re trying to make embryo donation as simple as possible, but at the same time there’s a reason why it’s complicated, because there is so much complexity to consider. You seriously have to go through all of the worst case scenarios from the very beginning. People just don’t know what they don’t know, and you guys are making it known. Thank you.
Gina Davis: That’s one of the really beautiful parts of this community is that the embryo donors are former fertility patients. They’ve often gone through their own journey to get there, so they understand the fertility journey on the recipient side in some way, shape, or form in a way that I don’t think other gamete donors necessarily do.
They tend to be a little bit older, usually having started their own family first, so they’ve maybe learned some of these things through the years. They just tend to be people that have a little bit more to think through and maybe are prepared in a sense of maturity to embrace these kinds of complexities and just ask themselves these questions, and maybe do this work to be pioneers of new forms of family building.
Dr. Aimee: I love it. Is there anyone that you think should not donate embryos? You have people that reach out and want to donate their embryos, have you ever said, “I can just tell this probably isn’t for you.” Can you speak to that?
Jen Vesbit: Yes, but I think they need to come to that decision on their own. Obviously, you can never convince somebody. I will say with support groups that I’ve run in the past, I’ve felt really good about people that have come through the support group and decided it’s not for them. That wasn’t necessarily me thinking this person isn’t fit.
Maya, maybe you can speak a little bit more to psychological evaluations and things like that. The support groups I do are more just psychoeducational. But, yes, I think it’s especially great when people come to that decision on their own. I know that’s not always the case. It definitely isn’t for everyone. That’s why we’re working really hard to educate people, so that they can make sure that they are making the best decision.
That said, one of my mantras, and actually the counselor I was seeing at the time when I went through donation, what she said is you make the best decision at the time with the information you had, and then our job from there is to really navigate whatever else comes up. In that way, it’s a two-way thing. Donation isn’t for everyone. For those who choose it, it’s that open-mindedness to growing through the process.
Maya Grobel: Embryo donation is different, as Gina mentioned, than other gamete donation. Embryo donors are essentially unintended donors and the embryo is already created. With sperm or egg donation donors, they go through an evaluation process. People are disqualified based on certain genetic, mental health, medical reasons and whatnot.
It’s a bit different with embryo donors because the embryo is already created. There may be some health history that if they were donating eggs they would have been disqualified, but since the embryo is already there, hopefully they do a genetic counseling writeup, workup, and meeting, and they’re able to share with the recipients, “My family has a strong history of,” whatever it is. If the recipient is comfortable with that, then that might be a good fit.
It really is a different thing with embryo donation because it was planned to be donated in that way.
Gina Davis: I was going to tag on to say that it also takes moxie to think through this process and decide you shouldn’t donate your embryos. Just doing the internal work to really understand the space, understand what the expectations can be, understand how you can handle all these things through life, through your family dynamics in the future. We think that it takes moxie to really do that, to surface all of those issues, talk through it, figure it out, and go, “I feel resolved,” in whatever decision it is.
We think it takes moxie both when you decide to donate your embryos and when you decide to have another disposition option. Just to close the door and say, “I’m done with my fertility journey, and this is how I’m ending,” we think that’s very healing.
Dr. Aimee: Do you guys run support groups for people like yourselves who have also donated embryos, and people like Maya, just to support these families through their parenting journey of a donated embryo or a recipient of a donated embryo?
Jen Vesbit: Yes, we do. The support groups that I was running prior to joining EM*POWER have taken a brief hiatus just because of all of the effort that has gone into creating this community space and education space that we’ve been working on.
Our hope is we’re about to launch basically a 12-month education and support series for donors, recipients, and professionals. So, we are doing that work through education and support, and we will have some additional services for people who want more, who want one-on-one support or smaller group support.
Maya Grobel: We have an EM*POWER professionals group as well that we’re trying to build and we’re working to build now. We have a director of professional training, Melanie Mickelson, who is a licensed therapist as well.
We’re definitely going to run different kinds of groups, whether that’s through events, or drop-in, or like Jen was doing five or six-week support groups for anybody with remaining embryos who was considering what do with them, we’ll have recipient groups. Then we’ll have a network of therapists who can support people that are licensed in specific states, that can do these consultations that are a really invaluable and imperative part of it.
Dr. Aimee: What is your communication like with the families that you donated to? You touched on it a little bit, but I’d love for you guys to share your personal experiences along those lines.
Jen Vesbit: Sure. I can start. Actually, my recipient and I just happened to be in a news story. I’m from Portland, Oregon, and Oregonian is the Oregon newspaper. We were just on what became a front page story, and it talks a lot about our process and what we’ve been through in terms of communication.
Like I said earlier, I went off of DIY and found her on my own. When I chose to donate to her, it was very open. It was: let’s see how we feel. It was one embryo, as I said, and we didn’t even know if there was going to be a pregnancy, so we were both really open-minded to let’s take this step by step.
Once she did become pregnant, we talked a lot more about the fact that we both wanted to be open and honest with our children, and we both wanted to be a part of each other’s lives in some way. Again, it wasn’t extremely defined. What it has turned into is monthly updates via email where she writes this beautiful email once a month where she shares photos and all of the new happenings of the month. My twins are five years older than him, so I’m able to share those updates with them.
We also have a special situation because although we are on separate coasts, she has a tie to the state of Oregon, her parents live here and she grew up here. Prior to COVID, we were able to meet up, usually about twice a year, once around the holidays, which also coincided with his birthday each year, and then once in the Summer. That is something that we are reviving this July, and we will see him in person for the first time. My twins are so excited. When the mask mandate was no longer mandated, they continued to wear masks to school because they were going to be meeting with their younger brother — they call him their younger brother — in July, and they wanted to make sure that they were safe for that July meeting.
We talk a lot about this over at EM*POWER with Moxi. There are so many quirks and uniqueness to how they conceptualize him. He’s younger, so we don’t know as much about how he conceptualizes us, but we’ve really been on a journey of choosing language for each other. It started with cousins, but then cousins didn’t really make sense to my children who are a little older. We’ve really just evolved and let the children sort of help guide the language that we’ve used. So far, it’s been beautiful.
That said, as Gina said, I’ve also spoken out about the vulnerabilities I’ve felt along the way when I learned my recipient was pregnant, when I learned it was a boy, the night he was born, all of that. It’s been this gorgeous thing. I’ve also had some real feelings along the way, and I’ve shared those as well.
Gina Davis: My relationship is actually a little interesting. When I was looking to donate, as a genetic counselor in the fertility space, I was going to give the very best family history I could to whoever those families were. So, I reached out to my family, my very large Catholic extended family, and asked what’s the family history, tell me what you’ve been dealing with, and I got a bunch of responses back.
One in particular was about my uncle’s backstory about his medical stuff, but then said, “Do you happen to have extra embryos still?” It was a curious question that was followed up, and I learned that he and his new wife had been looking for embryos. They both had children in previous relationships and then wanted to have a baby together and had been on their own fertility journey. They ended up actually becoming our first recipients.
We had recipients in the works, but as things do sometimes, it doesn’t work out with the right timing or whatnot, so they ended up becoming our first recipients, my uncle and his wife. Technically, their daughter is a member of my family already, she’s my cousin, so we have an interesting relationship, but it’s beautiful.
It has evolved over time because I didn’t know his wife very well at the time and we had to find our way around all of that. She’s like another sister to me. She texts me all the time, I text her all the time, the happenings. The girls are so similar. I have a younger daughter and an older son, and our daughter is very similar to their daughter. There’s just so much similarity.
We keep a whole basket of clothes to be hand-me-downs for their daughter. She’s just part of our life. We talk about her all the time, we make artwork for her. Our children, it’s just a special part of their lives. It is a special cousin relationship in this situation, but they also refer to her as their sister. We sometimes say sister-cousin. It’s an interesting relationship.
I know that it’s going to be different with whoever our next recipients are when we donate the remainder of our embryos. Obviously, it’s not going to be quite the same thing because they’re not probably going to be related to us, but we’re hoping that we can just make this a more normal experience to share genetics in a unique way and just talk about it. Not bother too much about shaping the narrative and just letting the narrative emerge from the different perspectives, the children having their own language, different people involved having questions, asking the questions, talking about it, and letting that be part of the experience.
Jen Vesbit: I just wanted to mention, Gina and I have mentioned our relationships with our recipients and their children, and if you’re listening and that scares you or you think, “I don’t want that close of a relationship,” that’s okay, too. There’s really a spectrum of relationships. Like I said, my recipient and I started off with just a monthly email, and then we’ve grown into something closer. But there are so many different ways that you can navigate this and work through it.
If getting emails and photos and things like that doesn’t feel comfortable to you in the beginning as either a donor or a recipient, that’s okay too. What we really advocate for is in some way for the children to know and be aware that there is another human being out in the world that they are genetically related to. A lot of times that might mean leaving it up to them, but to be able to establish at least that knowledge is something that we’re really passionate about.
Dr. Aimee: Nice. What can fertility doctors and OBGYNs do to normalize conversations surrounding embryo donation?
Maya Grobel: I think one of the most important things that fertility doctors and clinics can do is to, first of all, have some early education around the possibility of having remaining embryos. Having embryo donation to another person or couple as a disposition option checkbox on a form that people do at the very beginning of their IVF cycle sometimes is not very helpful. What does that mean? How do I know? I don’t even know if I’m going to have embryos.
I think the idea of a choice for more education or a delayed disposition option choice or something of that extent so that people can really get the counseling, education, support that they need at the time that they have to make that decision because on the front end you can’t even really think about that.
Patients are also often just wanting to make as many embryos as possible without considering the potential disposition dilemma. There has been some research around how challenging that is for some people. Most patients will delay decision making, meaning they’ll just continue to pay for storage in a kind of a state of paralysis for about five years because they just don’t know what to do, they don’t know how to make meaning of it. That continues to tie people to their fertility journey even after they’re no longer a patient at the clinic. You have your children, the only way you’re connected is because you’re getting a bill, or they’ve been sent to a long term storage facility but you’re still getting a bill. It’s usually after five years where patients go, “We’re not going to use these for family building. What do we do?”
I think if clinics can’t provide information and education on their own, then, we don’t want to toot our own horns here, but link to an organization that can give unbiased education to support people in this decision making process that is really challenging. I think it’s really important for clinics to start incorporating just the rapidly changing technology in genetics and how much that has changed the landscape of donor conception, specifically around anonymity not being an option and the voices of donor-conceived people that are speaking up and saying, “This doesn’t work for us,” for the most part.
I think a lot of clinics don’t give the option of embryo donation. I meet people all the time that say, “We can’t afford egg donation. My clinic says it’s either egg donation or adoption. We’re on the list for adoption, but there’s a two-year list,” etcetera. I say, “Have they talked to you about embryo donation?” and they go, “No. I read something about that somewhere, but I’ve never really heard of it.”
If clinics can support patients in learning about embryo donation on the front end as a possibility for remaining embryos and just making decisions around that, informed decisions around how many eggs to fertilize, etcetera, and then on the back end for both recipients and donors, if they can provide some education and information, I think that’s the best they can do initially. Then of course providing the actual transfers and deciding whether or not they’re going to allow outside recipients to come in. There’s all of these different things.
That’s part of our clinic consultation service is that we work with clinics and we’re creating this specific program to work with clinics on how to create a framework for embryo donation at your clinic that works for you because every clinic has different policies, there’s FDA stuff, there’s ASRM guidelines, all these things that have to be incorporated. Most clinics just go, “This is messy, I don’t want to do this.” A lot of these “anonymous” embryo donation programs that clinics did have shut down because they realize they just can’t navigate it in a really ethical way anymore. We want to help support those clinics who are just trying to figure out what to do in this day and age.
Dr. Aimee: Right. I have some rules. If a patient wants to discard their embryos and they go directly to the IVF lab to do that, the lab has to notify me, and I do a phone consult and review embryo donation with them. I can’t even tell you how many times patients have agreed to embryo donation, and it’s been awesome.
I also have another rule, and I’m curious to see what you think about it. I don’t allow embryo donation within five years of creating embryos. Everyone’s situation is different. Obviously, there are some people that have so many embryos and they’re sure of their decision, but some people when they have fewer embryos, I sometimes have people that they’re six months pregnant and they’re like, “I want to donate my last two remaining embryos.” I’m like, “Can you just wait?” I have a five-year rule, and then you can donate. What do you guys think about that?
Maya Grobel: It is a recommendation to wait a hot minute before deciding to donate. We’ve encountered people, too, who are pregnant and they’re like they’re ready. Let’s just slow it down a second. There may be a reason for the eagerness sometimes that does make sense, like a friend who wants to build their family. Some people really want their children to be close in age. If they’re in a situation like Gina who had a good amount of remaining embryos, if she waited five years and then it took all the time it takes, then those children could be 10 years apart.
I think it’s case specific, but there is a recommendation, I believe it’s to wait at least a year.
Gina Davis: After family building, it is a question of how do you know when you’re done. That’s always a question for people that have remaining embryos. They often will come back and circle back, “Do we know when we’re done?” I think five years from embryo creation is in line with what we’ve seen in the literature from what it takes the typical person to make a decision about final decisions.
It is just a little bit of a tricky space because even people that have been raising their kids and really feel like they’re done, sometimes end up wanting to have another child down the line.
Jen Vesbit: I recently met with a couple who created nine embryos and haven’t even started the process of transfers and becoming pregnant on their own. I had two thoughts. One is I commend them for getting early education about the possibility of donating embryos. My other thought was, “What are you doing? You haven’t even had a pregnancy yet.” So, I can see both ways.
I think definitely always education early. In terms of decision, I think I agree it takes some time. How is this pregnancy going to go? How will you navigate parenthood? You don’t know how you’re going to feel. It’s impossible to know. It might be possible to know I don’t want nine children. That’s absolutely possible to know that. But you just don’t know how it’s all going to shake out. So, definitely we love early education, but making that decision too early can be problematic.
Dr. Aimee: Thank you guys for so much information. I feel like this will be a great resource for anyone who is considering donating their embryos. How can people learn more about your platform, where can they find you?
Gina Davis: They can find us at EmpowerWithMoxi.com. That’s the hub where they can connect to our education platform and our community platform where we have all of these events and new education coming out. Also, we have Moxi Matching where if they do want to connect and see if there is a match out there for them, they can find that on our platform.
Jen Vesbit: We are also on social media @EmpowerWithMoxi. We are on Instagram and Facebook and try to post regularly, and we are currently building up our other social media platforms. We love to hear from people in any of those ways.
Dr. Aimee: Awesome. Is there anything else you guys wanted to add?
Jen Vesbit: I think I just want to add hopefully the takeaway here is that as either a potential donor or recipient you have choices. You are not alone. Make sure that you ask questions, make sure that you find your people, that you’re getting the education that makes sense to you, you’re getting the support that makes sense to you. Overall, as we said, many of us felt kind of alone in the process, and you are definitely not alone.
Dr. Aimee: Thank you guys again for joining me today to talk about embryo donation. I can’t say enough about how important the work is that you’re doing, so please keep doing it, please keep preaching about embryo donation so more people can have the same magical moments that you’ve given others. Thank you again.
Originally published at https://www.draimee.org.
