Wendy Kramer: The Donor Sibling Connector

The Donor Conception Conversations Podcast is here!  Watch every Monday on YouTube or listen, subscribe, rate, and review wherever you listen to your favorite podcasts. 

In this episode of donor conception conversations, our guest, Wendy Kramer, will bust donor conception myths and teach you about connecting with donors and donor siblings (and how it doesn’t have to be scary). 

She is the founder of the Donor Sibling Registry and has single-handedly moved the needle on disclosure and donor conception openness.

 

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Transcript: (disclaimer: may contain unintentionally inaccurate, confusing, and/or amusing transcription errors)

 

Wendy: All of these parents, all of these contributors make a child who they are. Right. So when you realize that, then inviting in the rest of the contributors that you might not know, it's not threatening. They're not going to take your place. Your kid isn't going to like them better. You know, or I don't know, maybe they will, because kids like lots of people better than their parents, you know?

 

Wendy: It's not a real fear. So I think the most important thing for parents to know is that this can be something an enriching thing for families, not a fearful thing. There's really nothing to fear. Nobody wants to come in and be a parent to your kids. And half-siblings are enriching you know, the more people to love your kids, the better.

 

Lisa: Hi, I am Lisa Shuman and welcome to Donor Conception Conversations. This is a one podcast that will provide research based information, professional guidance and personal experiences about donor conception. This is the one place you can go to if you are a recipient or if you are considering being a recipient. If it's about donor conception, we are going to talk about it.

 

Lisa: I'm your host, Lisa Shuman. I've been practicing as a therapist for three decades. I've won awards for my research, and I've seen thousands and thousands of donors, recipients and donor conceived children in my workshops at clinics and at my program, the Center for Family Building. I've learned so much over the decades, and I want to share that information with you so you can have a better journey and be more informed as a parent.

 

Lisa: Today is the first episode, so welcome and I couldn't have a better guest. Wendy Kramer For those of you who don't know Wendy, she's the founder of the Donor Sibling Registry, and she has single handedly changed so much of our understanding about donor conception and changed so many lives by helping people connect with their donors and the donor-related siblings.

 

Lisa: Her business was born from her personal experience and since its inception, she has witnessed the experiences of thousands of others around the world. Wendy, welcome. Can you provide us with a little bit more of an introduction and tell us how the Donor Sibling Registry came to be.

 

Wendy: Surely. So first, thanks for having me. I'm honored to be guest number one. So let's see, the nutshell version of my story is that I was married in the late 1980s. My ex-husband experienced fertility issues, so we used a donor, an unknown person, back in 1989. And in 1990, my son Ryan was born. About a year later, my ex-husband and I split up.

 

Wendy: He was completely out of the picture. So basically from that time on, I raised my son as an only parent. There was only one book out at the time about donor conception called Lethal Secrets by Annette Barron. And in the book she talked about the importance of being honest with your child. And I had thought that maybe when my son was four, five, six years old, he might start asking.

 

Wendy: As it happens, he was about he was two and a half years old, came home from preschool and said, so did my dad die or what? And it was then I went, Oh my God, we're having this conversation. And we laid the very important cornerstone conversation of, you know, the sperm and the egg. And it was about a 40 second conversation.

 

Wendy: Then he went on to ask the next question about choo choo trains. And so basically that was the beginning and it was the cornerstone conversation that we then could build upon as he got older and had more questions then as it would be. My son was a very curious child and by the time he was six years old he was looking at me saying, I want to know who my biological father is.

 

Wendy: And at that point, I'm thinking, Oh my God, what have I done? What do I do? Like, of course you're curious, you know, and it just I think I was one of those people, and I'm sure a lot of people can relate to this. I was so desperate to be a parent, I really didn't think about anything else but getting pregnant.

 

Wendy: And I think a lot of doctors and clinics and sperm banks are all so focused on the getting pregnant that the other important stuff, the other important information that you should have to make an informed and educated decision. Those things just fall off the track there. So at that point realized my son had a right to be curious and a right to search for and find his close genetic relatives, his biological father and any half siblings he might have.

 

Wendy: We basically at that point. So that would have been 1996 or so. We had to wait for social media to be invented. And finally, in 2000, Yahoo! Groups came to be and we started a little Yahoo! Group thinking that maybe we could help him find the answers he was looking for. And then maybe in the process help, you know, maybe one or two families find their half siblings or their biological parents, the donors.

 

Wendy: And that was the beginning of the DSR in 2000 and now 22 years later, we have almost 84,000 members in more than 100 countries and we've helped to connect almost 24,000 of them with half siblings or donors with their biological children. So it was one of those like build it and they will come kind of things like we didn't know there was a need until we put it out there.

 

Wendy: And obviously there was a great desire and a need. I think, before we came along. People were never told that they had the right to be curious or the right to search for genetic relatives. This whole industry is so shrouded in secrecy and thereby shame, you know, the shame of infertility, the shame of using a donor. And we kind of busted all that open and said, there's nothing to be ashamed of, especially for donor conceived kids.

 

Wendy: And it's an innate human desire to want to know where you come from, your ancestry, your medical background, and your close genetic relatives.

 

Lisa: Mm hmm. It's amazing Wendy amazing. So while we're thinking about that, maybe you can help our audience know a little bit about something else that I think is really important as you're sharing this information about having donor relatives that people get really tripped up about, and I think very few people have the accurate information about and that is the lack of a tracking system here in the US.

 

Wendy: Well, yeah, I think that myth is perpetuated by the reproductive medicine industry, the sperm banks, the egg clinics, the egg agencies who claim to have limits on the number of kids that can be born for anyone donor. So that's really misleading because if you tell people you have limits, that leads one to believe you have accurate records and you know how many kids are out there.

 

Wendy: And the truth is that no, nobody has accurate records, even in the egg industry where they claim that SART has all records. Not true, because in our egg donor research, our egg donor parent research, we found that more than 40% of egg donor families were never even asked to report their births. So those numbers are not correct. And we certainly know in the sperm donation industry where now we have many groups of half siblings, over 100 on the DSR or some even over 200.

 

Wendy: Now those groups are growing and growing and growing that there is no accurate record keeping because that costs money. Whenever you ask in this industry, why is it like this or how come they don't do this or why won't this happen? Always the same answer one word money. It costs money to keep accurate records. It would cost money then to limit the number of offspring.

 

Wendy: They wouldn't make as much money by selling all that sperm. Yeah. The fallacy is when we promise a number of families, we know in our research too, about a quarter of all sperm donors donate to more than one place. So even if in the future they became they had accurate record keeping, which, you know, I'll believe it when I see it.

 

Wendy: You know, sperm donors go all over, egg donors do to we have serial sperm donors and egg donors that just go from facility to facility. So for donor conceived people, nobody knows how many half siblings you might have. And I tell this to my son and all donor conceived people every single day for the rest of your life holds the possibility of a half sibling coming along.

 

Lisa: Yes. And what about also we have all these embryos that have been frozen for decades. Right. And last year, I think there was a child born from a 31 year old embryo and last year a 27 year old embryo. So we have hundreds of thousands of frozen embryos and we don't know how many of them were part of a donor sperm donor egg.

 

Lisa: And we don't know how many of them will be born now or decades from now. And so it's not really possible to have that information either, right.

 

Wendy: Well, this is what happens when you have a multi-billion dollar industry with no regulation and no oversight. Right. Like what could possibly go wrong? A lot. But it's because there's no regulation and no oversight. Nobody's watching. Nobody cares to look over this industry. And that is in part because the SRM, the American Society of Reproductive Medicine, keeps it that way.

 

Wendy: They're big money, they're powerful. They have lobbyists, and they keep any and all regulation record keeping anything that would move this industry into being more responsible or ethical. They put the kibosh on. They do not want anything to change.

 

Lisa: Well, let's talk about I mean, you know, in terms of the states, I mean, there are a lot of people who are advocating for these states to say we're going to regulate in our state and the states will say, yes, we're going to enact legislation that will allow us to regulate. But it can't be possible because those states cannot enact regulation.

 

Lisa: How is the state going to be able to do that if there's no way to track donors?

 

Wendy: Well, exactly. So I guess in that case, I can't say it could never happen. I'll just say I'll believe it when I see it.

 

Lisa: Right. And so I think the tough part is that there are so many people who get on this bandwagon of the state, or that state is going to enact legislation to track donors. How can they possibly do that? Right. I mean, I'm sure you see a lot of people donating right through Facebook and social media traveling around the world and donating in other countries.

 

Lisa: Right. And so how are we going to know? How can one state saying, I'm going to track all the donors who have ever been in this state? I don't I don't know how that's possible.

 

Wendy: Well, it's not possible with the record keeping that exists right now.

 

Lisa: Right. There's no state to do that. And it is completely.

 

Wendy: It's not even possible because they don't have the records. You know, this industry has an amazing amount of floods and fires. Floods and fires like you could not believe where so many records have been lost. So it is so common for people to ask for records, either donor conceived people or the donors themselves or parents and the records are there offsite.

 

Wendy: They're lost. They were ruined in a flood. They had a fire. So there's all the excuses that people get all the time for not having accurate records. But the bottom line is there are no accurate records. So, you know, that's where we are today. Could they become accurate in the future? Sure. They could become accurate at any time.

 

Wendy: But the industry refuses to put the money and the time into being more ethical and responsible by having accurate records. They just won't do it. It's not like they're unable. Sure, they're able. They just don't do it right.

 

Lisa: But I see many civilians who say, well, this state I'd like to use a donor from the state because the state is making efforts to enact legislation that would allow them to track records of donors. And I can't see how any one state could do that. No. Yeah. So it's really good for our listeners to understand that don't go to any particular state thinking that that's going to happen in that state because it's it's not possible.

 

Lisa: Right.

 

Wendy: It's state and it's also clinic or sperm bank.

 

Lisa: Right.

 

Wendy: So the clinics and the sperm banks are going to tell you everything you want to hear so that they can make a sale. Their job is to sell eggs and sell sperm. So if you go on their websites, you'll read a lot of information. That is not true because it's all marketing materials. It's all about making the sale.

 

Wendy: You know, we have, you know, celebrity lookalike donors. We limit the number of kids to ten or 20 or whatever. And it's it's just none of it is true. It's just all marketing materials.

 

Lisa: And they can tell their own donors not to donate a certain more than a certain amount of time. But just because they tell the donors doesn't mean the donors are going to do it. As you said, they can go to multiple agencies. They can donate to their friends, they can donate in other countries. So it's really important for our listeners to understand that because they really need to be able to be clear with their children.

 

Lisa: Which brings me to my next point, which I think you could speak to our audience about, which is about donor related siblings and how it's so important for people to start to understand is hard as it may be to understand that it doesn't have to be scary to start to search if this is something that they feel ready to do.

 

Wendy: Yeah, I think let's talk about that. But I think to give proper context here, we have to take a step or two back and go, why are the parents in this situation? Right. So why does this industry still mandate and promote the idea of keeping a human being from their close genetic relatives for 18 years? Nowhere in the world, nowhere in history has any society deemed that it is in the best interests of the people to keep them from their close genetic relatives for 18 years.

 

Wendy: So why is that accepted practice in the sperm and eggs killing industry? I don't well, actually, I do know, again, it's money, right. Because they're going to put more money.

 

Lisa: Well, we saw the same thing in adoption for many years. And adoption systems saying, you know, tell your children that your parents died in a fiery car crash and, you know, don't ever tell them. And then, of course, those adult adoptees grew up and said, you know, that's not right. And it's kind of we're kind of following the same story.

 

Lisa: Well, but.

 

Wendy: We've learned the reproductive medicine industry learned nothing from the world of adoption because they're still doing it. Decades later, they're still doing it. So they're doing it because obviously it makes more money. But the parents are sold this idea along with the gametes, so that we believe keeping our child from their close genetic relatives for 18 years is somehow in their best interests.

 

Wendy: Right. And the whole thing the whole premise is crazy. So I think that's where we have to start. Like these parents are where they're at when contemplating connecting with donor siblings. They're there because of an industry that has promoted this whacky idea and sold it and made it mandatory that my child could not know his genetic relatives before he turned 18, which is absolutely insane.

 

Wendy: There is no research that points to that being in anyone's best interest. Most specifically donor conceived people, and quite a lot of research that says it is in the donor conceived child's best interest to grow up knowing their relatives. Right. We don't keep our children from their cousins or their answer uncles or grandparents until they're 18 or until they ask about them.

 

Wendy: They're the relatives and we introduce them, you know, when they're kids, because that's the right thing to do. So I guess I have to like just throw this question in there. Why is this okay? Why do people just take this as being accepted practice and in the child's best interest when it's obviously not so? So that said, here we are.

 

Wendy: We now have thousands, millions of people who have donor conceived children, who have these have siblings, other children who were born from the same egg or sperm donors. Right. So I guess let's take one step back now. At the beginning, when you're buying your sperm or your eggs, there's an opportunity for the vendor, the sperm bank or the egg clinic or the agency to properly counsel and educate you on the importance of a child growing up, knowing their close genetic relatives, knowing about their ancestry, knowing about their medical history.

 

Wendy: But the industry is failing parents and donors with not properly counseling and educating them on the importance of these connections. Because if people were properly counseled and educated at the front door to that clinic, they would not opt for the 18 years of anonymity. They would do what we have now dozens of egg clinics doing, connect the donors and the parents right from pregnancy or birth.

 

Wendy: Why not? And yet there are still not. One sperm bank will do that, and the majority of egg clinics in the U.S. still won't do that. And we have to ask why, if it's in everybody's best interest to empower parents and donors to be in control of their own relations chip rate from day one and determine the depth and the breadth.

 

Wendy: Maybe it's just medical sharing. Maybe it's becoming family to one another. But let the people decide that. Not a middleman saying we know what's best for you and your family and that is to keep you apart for 18 years. To me, absolutely insane. But here we are.

 

Lisa: Well, let me ask you a question. This is something that I've experienced. And you tell me if you've experienced this. So as you I think, you know, I started one of the only open donor programs at a seen inside of a clinic on the East Coast that I know of. And typically, when I talk to parents or parents to be about the possibility of having an open relationship with their donor, and as you said, there's various levels of openness.

 

Lisa: So there's all sorts of options. Very often they're afraid that that donor is going to be, all of a sudden, a parent to their child. Right. There's like this anxiety. It's about the infertility and the fears and anxieties. But then when I speak with the donors, very often the donors say the same things to me. They say, well, you know, I really don't want to be a parent to this child.

 

Lisa: And so it's interesting that both of them, in my experience, I see over and over again, feel like they have to kind of be let off the hook for things.

 

Wendy: Because this is the myth that perpetuates by the reproductive medicine industry. Parents are told, Oh, you need this eight years of anonymity because that donor is going to want to be a parent to your child. And donors are told, Oh, you want this? 18 years of anonymity. Those parents are going to come looking for you for money and they're going to want you to parent their child.

 

Wendy: In reality, none of those things are true. Where did those people get those fears from? From the industry. So the industry can't wonder why these people feel this way is because these are the myths that the industry perpetuates. And I know I hear from egg donors all the time who say my clinic told me that, you know, parents are likely to come after me, they're going to disrupt my life and invade my privacy.

 

Wendy: Parents are told that donors are going to want to come in and be a part of your life and parent your child a myth and a myth. But this is the myth that's perpetuated so that the industry can keep the 18 year separation there. And people can think that's in the best interest for them and their children. But it's all myth.

 

Lisa: And then in reality, what happens and you tell me what happens in your reality. Once I... I break that myth for them and they decide, okay, we're going to meet the recipients are so happy and the donors all of a sudden where they once would have had, let's say, you know, an egg donor is going to have this medical procedure and she knows she's doing something nice for another family.

 

Lisa: And now she sees the faces of these people whose lives she is changing. And she says, Oh, my God, I feel like this is such greater meaning for me. This feels so much better for me because I see these people. I really feel that I'm helping them. I really feel like I'm helping them heal these wounds and build their family that feel so much better to be able to connect with them so everybody makes out.

 

Lisa: It's been great for everyone involved, but they are so hesitant in the beginning and so anxious about it. So what are your experiences of recipients and donors after they first meet? What's their experience of saying, you know, how was my first meeting and how is it different than last year?

 

Wendy: Well, yeah. Let me take one step back and let's talk about what is that hesitation and that fear? What keeps families from not connecting? Right. And most usually what keeps families from not connecting is some kind of fear. Right. And the fear usually is from the non-biological parent, be it the mom, an egg donor family, the dad in a sperm donor family, or the mom in the LGBTQ family.

 

Wendy: Right. It's the Non-Bio parent that most too often struggles with making these connections because it can feel very threatening to them. These people are that person has a connection with my child that I don't myself have. And if you're not a really confident person and secure in your parenthood, this can seem like a threat. This person is going to come in and usurp me and be insecure and I can't be right.

 

Wendy: Again, this is all a myth, too. We're not taking away from a family by connecting. We're just adding to. So children need to be taught that who they are is this wonderful blend of nature and nurture. Right? We are who we are because of the parents that raised us and love us and take care of us and the parents that give us our biology.

 

Wendy: 50% from the egg, 50% from the sperm. That's what makes us who we are. So to minimize any one of those contributors is not fair to a child. It matters who raises them and loves them. But it also matters who gave the DNA, the egg and the sperm. So you can't minimize or negate the importance of any of those parents.

 

Wendy: So once. Once you realize that all the parents are important, at the same time, one is not knocking the other one out. One is not taking the place of the other. All of these parents, all of these contributors make a child who they are. Right. So when you realize that, then inviting in the rest of the contributors that you might not know, it's not threatening.

 

Wendy: They're not going to take your place. Your kid isn't going to like them better, you know, or I don't know, maybe they will, because kids like lots of people better than their parents, you know, it's not a real fear. So I think the most important thing for parents to know is that this can be something an enriching thing for families, not a fearful thing.

 

Wendy: There's really nothing to fear. Nobody wants to come in and be a parent to your kids. And half siblings are enriching. You know, the more people to love your kids, the better. Right. I mean, that's that was my thinking.

 

Lisa: Who doesn't want different siblings in the ones they have anyway, right?

 

Wendy: Absolutely.

 

Lisa: Brother, little sister.

 

Wendy: Totally. So, you know, and it's like, is there a guarantee you're going to like them? No. I mean, I always tell people, look around your Thanksgiving table. Do you want to hang out with everybody there? No, probably not. You want to hang out and spend time with the people that you're most like minded with. And this is true for connections for the parents who connect their, you know, minor donor conceived kids, for donors who are connecting with adult donor conceived kids, for parents connecting with other parents for everybody.

 

Wendy: Is there a guarantee you're going to like each other and want to hang out? Nope. But that doesn't make these people any less your child's genetic relatives. And did they have the right to know these people as they're growing up? Absolutely. Why? Why would you keep them from their half siblings? You know, because we have too many people that come to the DSR as adults.

 

Wendy: They see that their parents joined the DSR years ago but never allowed them to connect and know they're half siblings. And so you get these adult donor conceived people who are like, okay, wait a minute, I could have grown up knowing my half siblings and you didn't let me. Why? And there is no good answer. Except I was afraid.

 

Wendy: I had fears, I was insecure, I was feeling threatened. You know what I mean?

 

Lisa: So now we allay those fears. What is your experience with the recipients when they finally meet them? Don't they feel so much better that you know, it wasn't securing after all?

 

Wendy: That's the same with disclosure. You know, for parents who haven't told, who are about to tell, they're in a state of fear like none I have ever seen before. They are filled with anxiety and panic about the impending telling the child. The truth. And I see that fear and that anxiety with the impending connecting with my donor or connecting with my biological kids, parents or connecting with half sibling families.

 

Wendy: There's this anxiety that is there that really doesn't need to be there because that's the worst part, is the before. Once the connection happens, oh my God, people are elated and joyful and relieved to and excited about what the future might hold and, you know, it's all completely positive.

 

Lisa: Yes, absolutely. And I hope that our audience can kind of take heart that that can happen, that they can feel that it's not so scary after all, that once they connect with these donor conceived siblings or the donors, that it won't be this fear that someone's going to come into your life or do things that you don't want them to do that, you know, just like everybody else, like Wendy is saying, you know, there's some people you're going to like, some people you don't.

 

Lisa: But it's not their normal people. They're average everyday people just like we are. And it's such a nice thing to be able to gift and to give to your children that connects. It really is beautiful.

 

Wendy: Absolutely. Well, in these groups, some people are really afraid of the large groups of siblings. Right. Like, okay, I could connect with five or seven or ten. You know, I just logged into the DSR and I see that I have 78 half brothers and sisters. Oh, my God, what do I do? Or my child has 78 half brothers and sisters.

 

Wendy: Oh, my God. They're overwhelmed. They're afraid. What does this mean? Am I going to have, you know, dozens of people knocking on my front door? And no, everybody's extremely respectful. The people who have already connected usually they have like a welcoming committee, you know, of sorts, like they make soft landing pad for the new half siblings that come along these connections happen.

 

Wendy: Like you as a parent or a donor conceived person or a donor, you are in control of this feed in the depths of how you make these connections. Right. So there's no right way or wrong way. Some people are like, Well, I'll just communicate via donor sibling registry message or email or Facebook for a little bit. Some people are like, Here's my phone number.

 

Wendy: Let's meet at Starbucks tomorrow, you know, so there's different levels of feeling comfortable again, no right way or wrong way, but it's just important to make the connection for the minimum of sharing and updating medical information because of if you're saying right now, oh, well, my clinic or my sperm bank does regular medical updates, and then they give anyone who's to use that donor updated medical information.

 

Wendy: That is 100% incorrect information. Most of the time, the only way to get updated medical information is by connecting the donors with the parents, with the donor conceived people. That's how you're going to get medical information, not from your clinic, not from your sperm bank.

 

Lisa: 100%. I'm with you. And maybe on our next call, we should start talking about that because that is a really, really important topic for people to understand, particularly because, you know, people say, oh, my daughter is healthy. Well, you know, young, young people usually are healthy. But health changes over time. And if you don't know what's happening with your donor conceived siblings or your donor, how will you know?

 

Lisa: Right. So those are really important pieces of information. And so I hope you come back on again. Wendy, I really love to have you back.

 

Wendy: Thank you so much for having me. And I can't wait to tackle these issues one by one and help to better educate people.

 

Lisa: It's wonderful. You're a gift to our industry, Wendy, and thank you so much for coming. And if you want more information, please to go on the Donor Sibling Registry. Is there any information for people to look for?

 

Wendy: Come to the Donor Sibling Registry or I'm always available. My email is wendy@donorsiblingregistry.com and I'm available seven days a week. If you need any help, just email me. Call me. I'll be in touch.

 

Lisa: That's great. Well, thank you. And that's such a gift. And I really appreciate it. And I'm sure everybody who's listening appreciates this. And thank you for joining us. If you want more, please subscribe and review and always you can find us on family building dot net. We'd love to have you as part of our community. Thanks so much.

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