Creating a Family: Talk about Adoption & Foster Care

Disclosing Donor Conception to Our Kids

May 04, 2022 Creating a Family Season 16 Episode 18
Creating a Family: Talk about Adoption & Foster Care
Disclosing Donor Conception to Our Kids
Show Notes Transcript

Have you conceived through donor conception or are you considering this? Join us for the fascinating dive into disclosing (or not) this information to your child. We will talk with Dr. Patricia E. Hershberger, Associate Professor at the College of Nursing and Affiliate Professor at the College of Medicine, Dept. of Obstetrics & Gynecology, at the University of Illinois in Chicago.

In this episode, we cover:

  • How common is donor conception in the US? In other countries?
  • What percentage of parents in heterosexual couples tell their child of their donor conception?
  • Is there a difference in the percentage of parents disclosing donor conception with children conceived by donor sperm, donor egg, or donor embryo?
  • Is there a difference in the willingness to discuss surrogacy with children? 
  • What does the research show about how many parents that say they are going to tell actually do tell by age 5 or age 10 or age 15?
  • Is there a difference of opinion in the professional field on whether children should be told? On whether professionals should counsel patients to tell their child?
  • The impact of over-the-counter genetic testing on parents’ willingness to disclose donor conception and infertility professionals’ willingness to encourage disclosure. 
    • Genetics study in school also raises questions 
  • Is telling more common in same sex couples?
  • What are the motivating factors for parents who have told?
  • What reasons do parents give for not telling their child?
  • Is unresolved grief over their infertility (if infertility was a factor) a motivating factor for not telling?
  • Research has found that there are two general approaches behind when to tell children about their conception by donor sperm, egg, or embryo: “seed planting” and “right time”.
  • What is the average age that parents tell their child about their conception via donor sperm, egg, or embryo?
  • What word do parents use to describe the donor to the child? Does this word differ based on whether the parent is in a heterosexual partnership, a same-sex partnership, or is single?
  • How do parents talk about donor conception? If a two-parent household, which parent usually tells?
  • Is there a general story-line that parents use when disclosing donor conception to the child?
  • What does the research show about how donor conceived children feel about donor conception? Does it impact the quality of family functioning in a positive or negative way?
  • Use of children’s books.
  • What role could infertility professionals, especially nurses, play in disclosure decisions for infertility patients?
  • Should nurses, or other professionals, encourage disclosure?
    • How can they support following through on disclosure of donor conception?


This podcast is produced  by www.CreatingaFamily.org. We are a national non-profit with the mission to strengthen and inspire adoptive, foster & kinship parents and the professionals who support them. Creating a Family brings you the following trauma-informed, expert-based content:

Please leave us a rating or review RateThisPodcast.com/creatingafamily

Support the show

Please pardon the errors, this is an automatic transcription.
0:00  
Welcome everyone to Creating a Family talk about infertility. Today we're going to be talking about disclosing donor conception or surrogacy to our kids. For those of you who have listened to this show for a while, you will know this is a topic that I have a great deal of interest in. So I am really looking forward to talking with Dr. Patricia Hershberger. She is an associate professor at the College of Nursing, and an affiliate professor at the College of Medicine Department of Obstetrics and Gynecology at the University of Illinois in Chicago. Welcome Dr. Hershberger to Creating a Family.

0:37  
I'm delighted to be here. Thank you so much for inviting me. You have done some really interesting research on disclosing of donor conception. And it is. It's fascinating, I am so thankful that I know there are others who were doing it and a number that we have Dr. Golden Bach, we've interviewed. And so there's a number that we've interviewed. But I am so thankful to be reading research on this topic, because I think it's important. So let's jump in how commerce, we're going to start with kind of laying the groundwork here. How common is donor conception in the US? And then it also I'm curious to compare that to other countries. But let's start with the US.

1:17  
Yeah, thank you so much for that question. So as you may know, and your listeners may know, Don, the exact estimates about the numbers of children born or I should say the exact numbers of the children born following gametes, such as egg and sperm, and embryo donation or embryo adoption are really difficult to obtain, they all hurt. Yeah, I did do some digging around. And I did a find out that the International Committee for monitoring assisted reproduction. And this is an international committee published some data in 2018, about the number of cycles that were performed for egg donation, which were just over 65,000 in for sperm donation, which they published, was over about for close to 45,000. However, I do want to say that 45,000 Number, when you look at the report they put out, it did not include sperm donation from states, which is really challenging data to net, we are able to get here in the US more accurate estimates about our egg donation in our embryo donation or embryo adoption numbers, because those numbers are have been requested, actually, by the Centers for Disease Control here in the US and the request fertility clinics to report that data. And we've been doing that for a while there are even some flaws with that, for example, not all of the fertility clinics in the US will report their data to the CDC, the vast majority do so great, that we still have some limitations and looking at how many numbers how many babies are actually born from these procedures. Yeah, and and I was curious about the numbers you gave at the beginning, you said, were they international numbers or US numbers. They were international numbers, especially for egg donation. But the sperm donation numbers that about 45,000. That does not include the US data because again, sperm donation data is not required to be reported as egg donation and embryo donation embryo adoption are so we less in fact, and we did have that said there is a caveat. So back in, I think it was 1988. There was a study put out by that, at that time, the US Congress and an Office of Technology Assessment. And they gather data on sperm donation. Again, this is 1988. And they found that there were about 30,000 children that were born from sperm donation at that point in time. So since 1988, we haven't really had a good assessment on sperm donation in the US. It's interesting, isn't it? As people who are interested in research, it's always a little frustrating to have so little data. And as I understand it, egg and I don't know, I don't know the data on sperm donation, but egg donation is significantly more common in the US. Is that true?

4:34  
Well, again, I wouldn't say that, necessarily. I do know that individuals who are choosing to use donor egg donor sperm even embryo adoption on embryo donation. Those numbers seem to be rising really worldwide and in the US. But if you think about it to Dawn sperm donation is it's not quite as medically involved. Chores are

5:00  
As is egg donation, so egg donation, there is treatments that both the egg donor as well as the recipient a woman has to undergo. So it's a little bit more involved procedure as is embryo donation. And when I say embryo donation, I'm including those families that use embryo adoption is well, yeah, we use the term embryo donation to different models, be it a medical model or an adoption model. But embryo donation is the term. Yeah, but I don't particularly care. Yeah. So it's interesting, I would agree with everything you're saying. And it certainly is on the rise. Now, let's move to talk about the telling part, which is what we really want to focus on the Thai disclosing of the child. So what percentage of parents and let's I'm going to start by saying heterosexual couples, so where there is a man and a woman involved, tell their child of their donor conception? And I wouldn't, and I'm including at this point, egg sperm and embryo? No, and and I should preface this by saying, this is probably one of the challenges for parents listening in is you, I think you're talking to a researcher. So when you talk to a researcher, I have to look at those studies that have been done about what do we know about parents who are telling? And what are some of these factors that also influence telling and not telling, and also what we find even when we do the research, if the research is done at one point in time, for example, I think you had mentioned to me I think before we went on air, some of the work that Linda AquaGuard has done over at New York, some fabulous work, some of the best work, we have a country, she actually went out and tried to encourage families that use egg donation to be involved in her study. I think the study was published in 2016. And what she found out those families, only about 46% of the families that have use egg donation on that participated in that study had told their children now what we don't know is that there are likely families who have not told that did not want to be involved in that study. So that number that Linda, read, get 46% which is accurate for the families that were participating. But when we look nationally, it's probably less than that. Yeah. If it's okay, if I could just share quickly, my team and I here at the University of Illinois, I actually did one of the very few longitudinal studies here in the US. And we looked at also egg donation appearance at pregnancy and their thoughts about lying or not telling their children and many of our participant families, yeah, pregnancy, we're wanting to tell their children and we're excited about it. Then I would say, just a few years ago, we've re interviewed those families, when their children were right around age 10. Now, granted, this was a small sample size, and all the parents were here or had their pregnancies here in in the Chicagoland area. But what we saw in that longitudinal study is that many families that wanted to tell even by the time that their children were aged, and in fact, not disclosed, if the number was as high as 6%. Again, the sample size was small. But it's I think it's a better indicator, because we did follow parents from pregnancy through that 10 year period, as opposed to just looking kind of at a cross sectional sample and getting parents at one point in time. You know, it's such an interesting point and what you said about Dr. Applegarth research, and as well as others, it's, it's the people who are not telling are often also I don't know this, I'm guessing actually, I would think they might also be less likely to want to participate in any of the studies because one of the things that I've seen over the years, 1415 years I've been involved in this is it does feel and I do not have research to support this. This is just anecdotal. But it feels like at the beginning, there was zero interest in telling for most and in fact, many of the professionals were Why would you do that? That is dumb. Don't tell, of course you shouldn't tell. I had an interesting conversation with a head of a well known prominent male fertility specialist who was also involved with a sperm bank and he was like, I think that's the most ridiculous thing in

10:00  
Bro, why in the world would you tell? You know, he's just totally dismissive. And so I that so we've come to the point now where it feels like

10:10  
that families think, or they think that it's the right thing to do to tell. So in a way, it's like, I feel like that's progress. And it's like we're giving they give lip service perhaps. And that may be a little dismissive, but they're, they at least acknowledge the benefits of and that we're going to talk later why that might be. It may be because we have been successful at it trying to help understand some of the ramifications for not telling our for light discovery. But it also could be because of the boom in over the counter genetic testing and the realization that they can't keep this secret. So anyway, either way, people are at least acknowledging, but it feels like that studies such as yours, as well as others, indicate that in fact, while they say they're going to in fact, they don't up to a certain age. Is that would that be a fair assessment? Again, from anecdotal view? Yes. I mean, are the research evidence that we have out there today really confirmed on what you're saying and observing, you know, as you're talking with parents? Yes. Many parents I think have that those good intentions, in some parents are able to follow through and talk and tell with their children. No problem at all. And kudos, kudos to those parents. Other parents, we definitely see they're wanting to tell, but they're struggling with telling, really wondering how that process should unfold. And then we also know, and even in my research would confirm that there are some parents that really don't want to tell, you know, that pregnancy are consistent with that. I know, we can talk later about some of the reasons but also see that as well. Yeah, I would throw out a fourth category, which is kind of a subcategory of one of yours. And that is they think they should tell, but they don't really, they're not committed to they should I mean, they've at least acknowledge that perhaps they should. But so just the the, okay, do you see a difference between? Because we're talking about donor gametes or donor embryo? Do you see a difference between parents who conceive with donor sperm with donor egg or with donor embryo? Is there a difference in willingness to discuss, to not discuss or disclose? You know, what I have to acknowledge at some of the work that's coming out of Europe, because they have done they seem to be a little bit more ahead with their body of research than we do, than we are here in the United States. And hopefully, my team and I and others will, will will bridge that gap. I'm rooting for you. Thank you. But what Yes, there are some studies that are coming out that are comparing different groups. And we're definitely seeing that our our sperm donation parents struggle, telling our egg donation recipient parents seem to seem to have the best ability to tell overall, and embryo donation embryo adoption parents, they also seem to have a very hard time to now there are some caveats with because we also, as you know, Don, we also see, increasingly, our LGBTQ plus population are using donor gametes, increasingly so in those families, although many of them, who I've been talking with, as part of my current research, are wanting to know kind of what how are the best ways to tell those families seem to have a little bit easier time talking and with their children about how they work and see, as opposed to other family.

13:57  
And that makes common sense to me, with two guys or two women. As soon as the kids are old enough to understand that there needs to be a sperm or an egg. It's going to it's going to be a discussion. So that seems that seems very and that also fits well with what we see. I mean, really. So that's it. We don't really see a great deal of hesitancy with them. I have to admit I am I wasn't aware. And I'm surprised that donor eggs, families that are created through donor egg, are more willing to disclose than donor embryo. That's really interesting to me, because I would have thought with donor egg it is only one parent has a genetic connection. And another parent does not the mother does not obviously the father does I mean if they if it's not just a double double donation, in this case, we're not talking about that. So the so there's genetic equivalency and equivalency, what's the word? They're unequal. So the because of that,

15:00  
is that there's the I would have thought there would have been less there would be a feeling of, of they the child will not be as much mine and so that that unequal illness would have prevented would it be a added thing, whereas with embryo donation, neither parent has a genetic connection? So, I don't know, that's just really interesting to me. I thought that too, and there hasn't really been a deep dive into to really tease out some of those differences. So we could kind of just speculate as to why that may be the case. Right? It's you know, the other thing I'm really I'm fascinated by that. The other thing that surprises me is that, it seems to me that I don't know the percentage but a fairly high percentage of donor embryos come through adoption based programs. And as a result, they're being encouraged to disclose so anyway, either way, it doesn't matter. I think that's interesting. That is very interesting. How about the difference in willingness to discuss surrogacy? With children now surrogacy think people know this, but they're generally speaking the it is the genetic child, fetus of the embryo of the parents being transferred to a surrogate, and then so that the surrogate does not have a genetic connection. Now, that's a that's a great question. And interestingly, when we do look at the different types of donation that are available, such as the sperm a embryo, and then our parents who are using surrogacy actually see that the parents who use surrogacy are the most likely to tell that makes sense to me or right they're likely to tell their children about right about the circus.

16:50  
If and if for nothing else, it's an easier story to tell. Mommy and Daddy needed help they needed a mommy in a mommy's tummy or wound or whatever they're going to use was broken. We this kind lady, you know, it's an easier story with which to tell. You don't have to get into the genetics or anything like that. So yeah, so it's a bit easier. So okay, so interesting.

17:13  
As you were thinking about the information that Dr. Hershberger is sharing today on disclosing donor conception, please do us a favor and share with your friends about this podcast. Most people know about podcasts and find out about new podcast through their friends. So if you have someone who is infertile, or who has conceived through donor conception, or is considering and saving to donor conception, please share about the creating a family.org podcast.

17:48  
So your research as well as others am summarizing here is indicating that parents may well say they're going to tell in the child's either during pregnancy or young age during infancy. But that a surprising or higher percentage, actually don't tell when you go back and check with him at age five or age 10 or age 15. Is is that what the research is indicating? Yeah, definitely here in the US, right, we're seeing that now. I mean, worldwide, there may be some differences, because we know certain things. For example, in the United Kingdom, there are actually mandates where the government is really mandating that, you know, parents tell and they're trying to put different pieces of legislation in place to really promote the tally to parents were here in the US, we only have these kind of governmental mandates, or legislation that really encourages that telling, and it's more left to the individual parents. That said, we do have guidelines that come out, for example, from the American Society for Reproductive Medicine 2004. And then again, in their guidelines from 2018. I've really encouraged parents to tell and encouraged the professionals such as myself to, you know, to help parents with that telling process. That's a great segue into the question of, Do you feel like as far as a professional in the field, do you see that there is a fairly broad consensus of the professionals both medical for mental health, I would assume there is but less this type MEDICAL than on whether children that that children should be told.

19:41  
I think we I like to think I should say and again, I don't have really data hard data to back this up because we haven't had a survey to really look at what clinicians are doing out in the field. But I would like to think as you stated earlier, Don that there does seem to be a movement for

20:00  
Are our clinicians to really encourage parents to tell. And that's really where my work being a nurse, nurse practitioner really comes into play. Because I see my role as someone who really does a lot of education. I think that's why I'm so one of the reasons I should say, I'm so interested in this population and of parents and donor conceived families and really trying to help parents, if parents are saying, for example, in the in the study, my team and I did a longitudinal study, that they're really still struggling with telling, even though they will, they shouldn't be telling, because they're wondering how to tell when to tell what does that process look like, hopefully, research that my team and I are doing. And then the education such as the programs are really helping parents understand ways to talent strategies, really kind of demystify the process, even normalize it exactly what it is, if not by normalizing it, and taking some of the fear the fear base out of it. Yeah, I agree. And I agree with you that nurses play a unique role in this because of their relationship with the infertility nurses in specific because of their relationship with the patients and their ability and their time to be able to help do more education. Do you think that the authority stayed? In my opinion, I think or implied, do you think that the impact of over the counter genetic testing on parents willingness to dis is impacting parents willingness to disclose conception? Definitely. You know, I think I see that just anecdotally, talking with parents. In fact, even talking with some of my colleagues in their clinical practices, some of them are even seeing parents come back and want to talk with the psychologists on staff or the counselor on staff, even the physician on staff, or perhaps the nurses, if they underwent gamete donation or embryo donation 10 or so years ago, maybe receive different type of counseling at that point. But now, seeing all of the issues going on in genetics, and what's happening with direct to consumer genetic testing, as well as the places like ancestry.com. And then, you know, seeking out medical advice or counseling advice for how to best out their children unit, their children are a little bit old.

22:31  
You know, and the other thing that the other way you can without genetic testing it before genetic testing, because I think a lot of doing genetic studies in school, which start in middle school, and the thing that when we have interviewed donor conceived adults who have found out later in life or didn't find out through their parents or found out later in life, they will often talk about it a number of things, but one of them is, you know, when they came back, and, and we're doing the, you know, the tongue roll and doing, you know, recess of doing the basic genetic studies doing the tongue rolling and the eye color and things like that. And talking about which, of course, is in high school, but also in middle and middle school as well. Talking about it with their parents, it put their parents in a position to either tell outright lies or lies of omission. And, and they don't have conceived individuals. Remember that. And I think parents don't think that through that. It's not a matter of just not telling, it will soon become a matter of line, whether it's outright or a lie of omission. And, and, and there's so many ways in the donor conceived adults who have found out are going back thinking, you know, when I asked where, you know why, you know, my hair is curly, and you told me something else. And it's that it's that betrayal. And that feeling if you lied about this, what else did you lie about? And I trusted you. And that's what parents I don't think think about I mean, then, of course, the over the counter genetic tests will be even more explicit. Or they think about it, I think, and they're just, they're still something's preventing them from sharing that information with their children. Well, let's talk about Yeah, that's a great, what are the reasons that you feel like our friends not you feel like you've done the research? What are the reasons parents give for not telling their job? Right, and thank you so much for asking that. I'd love to talk about that. Because much of my research up until the last several years, was really looking at trying to understand some of the challenges that parents were facing, telling as well as parents that were telling how come that was working so well for them. But some of the things just quickly for families. I think a big piece, especially for infertile couples, is that

25:00  
So many of them are struggling with that grief in reality, and that loss, I think of that kind of biological

25:09  
in vision, and they work so hard, many of them spent years in fertility treatment, I think grief, even though they have been successful, using donated gamete, or donated embryo, I think that's still part of that. And I think their child, their child, or their children, in many cases is so wanted, that that parent is almost, it's almost as if that parent just can't take any more sadness. If that child would say something like, we're really not my mom, then are you.

25:46  
You know, I think it's just, you know, so many parents, I have to really work with that grief and try to overcome that come to the point where, you know, I am this child's parent, no matter how they came to be, you know, I am the parent that's taking care of them. So I think that's one of the reasons I think there also are other reasons, for example, especially parent families, sometimes parents disagree. And I think that can also be very challenging one parent may want to tell the other parent doesn't want to tell, oftentimes, it is the parent that had the, you know, the sperm or egg that was unable to establish the embryo. So, so we see that and I think, are two parent families that can also be challenging. There are also lots of other factors and contextual factors, such as a person's culture, if your family tends to be very open, for example, and you talk about many things up and down the generations, I think it's a little bit easier for those families versus families that are in certain cultures where using a donor sperm or donor egg is taboo, and things of that nature aren't discussed. And now we're asking these parents to talk to their children and tell them how they were conceived. I think those also create some challenges for families as well as some examples. Does that help answer your question? Yeah, it absolutely does. Okay, so you've we've talked about the motivation for the factors for parents who are not the reasons the parents are giving for not telling. Have you talked with parents? Who did tell what motivated them? Because of another way to connect the question? Right? Yeah, thank you for asking. So right, so parents that Do tell, you know, many of them, for example, they'll say things like, you know, art, my family's always open, I've always wanted to be open, we've told a lot of people. And so we're following through on that. What we also see when you do like a deeper dive, is they may see things that something in their background also prompted them to want to, to really want to tell their children, for example, a parent once shared with me that when he was like 16, or 17 years old, he had a friend who found out they were adopted. And this caused a lot of trauma for them finding that out, you know, when they were a teenager, so from him from his living that experience, then when he and his partner used donor gametes, it was it seemed much easier for him to tell. And he had already told his children who were like six years old, pretty much from birth. I also see here that similar story in other parents that have told something perhaps in their background, maybe there was a secret that was kept in in their family, it that was found out and caused some family dynamics that ended up in a negative way. And then it really seems to push those parents to tell. There's also I do want to add, just getting back to your point earlier about genetics. I think everything going on in genetics and part of my background, I was able to do some genetic training at the NIH for a while. So just thinking about treatments that are using genetics, individuals are finding more and more about genetics. So I do hear from parents as well, that they really are thinking about like the health of their child. And when their child receives care from the pediatrician or from pediatric nurse practitioners. They want to be sure that their their children are receiving the best care possible. So that can also push a parent's foretelling as well as I think what you'll see in many of the research studies, that many parents feel like secrets are bad for families, kind of this moral judgment that parents make and

30:00  
that also seems to push parents toward telling and disclosing IP. And the secrets again, from the analogy and to adoption, what we have found through adoption is that if one person in the family if any of you have told anyone other than your partner, if you have one, with every person, this is information that will be shared, it just will be. It's possible if you've just told one person that it won't be, but otherwise, people are going to know. So if you've told somebody, then people, somebody that people who don't have a direct interest in this know and your child doesn't, and you have the chances for your child finding out from someone else, right. The research has found that there are two general approaches behind when to tell children about their conception through donor sperm egg or embryo. And I think this I would assume that this is not, I would assume that mental health professionals would not be the ones who would be saying it either a well, they would not be saying that, that one of these approaches is the correct way. But I assume this is from when you talk with parents, they're telling you that they're when they're trying to figure out when to tell there is the seed planting and the right time. So explain the difference between those two. Right. So this really this work, I want to say came out of us it was really a seminal study. It was published in 2007. In fertility and sterility, which is the Journal of the Association, American Society of Reproductive Health.

31:41  
Yes.

31:42  
So, yes, and this was looking at families kind of how they dispose. And for some parents, they would say things like, I want to tell early because I want to plant like this little see and kind of build on that. See, as the child grows. Parents, also were telling or wanting to tell said, Well, you know what, I'm gonna wait until my child can like understand the information. So this is kind of the right time parents, they identify some sort of a right time Viet, their child can understand the information, you know, when their child is age XYZ, but they have this identified kind of time period that they feel that would be right to tell their child. Um, so that kind of is out of some of the work in the US actually, I think Kristen McDougal, led that analysis on that work

32:38  
came up with this kind of the seed planting option versus the right time planting option. So what is the average age that parents tell their child? If assuming they do till about conception via donor gamete or inbreeding? Well, looking at Linda Apollodorus work, which is one of the predominant studies we have that examined that she found that about age seven or eight, I think here in the US, is about when parents tell although that work from Dr. applecart, which was published in 2016. And as you pointed out, and what I'm seeing, I think there is a shift towards parents telling. And I think many parents that go through infertility treatments, and fertility treatments today and in the last even five years, are more apt to tell it just seems to be that this space is opening up now. They're still wanting to know how to do it.

33:40  
I think that age would be lower, right? Seven or eight gifts. That study was repeated today. And having a foot in both the infertility world and the adoption world I have to admit, I feel oftentimes that I am standing on a railroad track and I see a train barreling down and I am screaming and yelling and saying, no, no, no, stop, stop. And I'm not being heard because clearly the research in the last 3040 50 years and adoption has shown that the seed planting is the is the much preferred way to do it. You tell a child so that they never they never know if you ask most people who have been adopted now not sadly, not all but most who've been adopted in the last 20 So are yours. They don't they don't know when they found out they always knew and and that is it. It becomes an easy and it also allows what we tell parents do adoption is start when they're infants because it's you're a little you're awkward at first you're not sure the words and you're kind of stumbling a bit. See a kind of practicing. They don't know. I mean, they're just you know, if you're reading a book to him, they're chewing on it. They're not paying any attention to the words, but you're getting more comfortable and then continue

35:00  
To add just the seed planting, just add a little more detail a little more detail and then follow the child's lead. And that seems to be and yet, I don't think that has been universally accepted nor in court courage even particularly in the, in the donor donor conception space. And I don't understand it I don't understand by the infertility world has. It's like, we're trying to reinvent the wheel don't we'll learn from the mistakes the adoption folks have made, for gracious sakes. Anyway, I throw that out there.

35:39  
This show is brought to you by the support of reproductive medicines associates of New York. They are one of the largest fertility practices in New York and one of the largest in the country. By combining the latest innovations in reproductive sciences with compassionate and customized treatment plans, RMA of New York is able to provide the very best possible care.

36:04  
Let's now talk about that. Because this goes into the awkwardness as I was saying it is, you know, you got to figure out words, and some of the words can be make you feel less than. So what words do people use to describe the donor to the child,

36:23  
my team and I have been trying to tease out and do some of these deep dives Don, about some of that language. And again, it depends on if you're talking with a child who's of a young age, or if you're talking with, if you're just telling your child who's maybe around age 10. Or if you're just starting that telling process, and your child is an adolescent, say 14 or 15. So the language can differ, but I would encourage parents to be as truthful as they can, in some of that also comes out of some of the work being done. And I want to also acknowledge the individuals who are donor conceived adults, because I found from those individuals, they often provide a lot of guidance about how not to tell yes, and, and resulted in some really trauma with the family, which is what I and hopefully this podcast, really trying to avoid, avoid. Because what I think in just Just quickly, if I can default here for a moment, what my team and I are really trying to do in our work is we're trying to keep parents as healthy as possible, keep parents health healthy, because we can see that parents that struggle with timing, sometimes this causes a lot of stress and anxiety for parents. And that's not good for their health. Also, to keep the Children's Health to optimize that as much as we can. And children, when they become adults, if they don't know that they were donor conceived, their health care could be compromised. Another outcome that we also want to look at in the work I'm doing is I want to optimize that parent child relationship. Having children of my own, I understand how important that is. And I know for these families that I work with, who have really on too many extremes, and jumped over many hoops to have these children is their precious thread. And parents want to optimize at all, all children are precious, I should say. But parents really want to optimize them here. So that said, getting back to the language. What I would recommend is that, as you said, parents start early and just use simple language if their child is young and build on that language. I would caution parents, because what we're learning too is that you want to be careful if you're talking about the donor, you may just call them a donor that's often preferred by many parents. Be careful though, if you're using terms such as if you don't know if you're saying like a nice man or a nice woman, sometimes those can be a little bit tricky. You might choose instead a term like a special woman or a special man or a generous woman, if they're generous in sharing their eggs. And what we've learned from the donor conceived adults is that they may meet that person and perhaps they aren't just kind as your mother had originally told you when you were younger.

39:49  
Yes beings sensitive and aware. And in time, the child what what you do know this is the information I know

40:00  
I feel that this woman was very generous, or this man is very generous, or This couple was very generous in donating their embryo. But I think just to shape it in a way that it continues, it can continue to be true as the story grows, and throughout that child's life. So I don't know if you want me to get a little more specific with some terms, and I appreciate you letting me answer kind of in a long way. Yeah. Yes, let's talk about Well, first of all, is there what or is there a general storyline that parents use when disclosing donor conceptions to the child? From a research standpoint? Have you seen that there's a method that either is preferable or is more common, and how parents the story kind of the the story that is told? Well, what I can say, I think there are some key elements. So you definitely want to mention that if the donor and that there were some missing parts or parts that didn't work, being an egg, get a sperm being an egg and sperm, or, or a uterus where the baby grows. So I think these are kind of the key elements. Oftentimes, two parents will say that there were some helpers. So in those helpers are typically the donor, the donor can be trained as a helper. But many parents too, are then saying that they did see like medical care. So usually referencing a doctor versus individuals that have fertility clinic. So I would say those are kind of the key components that I would encourage, at least in that basic telling kind of those initial telling conversations, I think, as has been said, on your program before, and I would definitely support this, especially when I'm thinking about overall health of parents children in the parent child relationship, is that this should not be a one time telling process. The situation is that this conversation takes place, just as other conversations do, between parents and their children. And I think the last piece I want to add if this is helpful, I did say this on a segment where I was talking to nurses about how to educate parents, you want as a parent, you want your child, ideally, to come to you with difficult questions, when they when they're old enough and need to have conversations about alcohol use, when they start driving, perhaps a birth control conversation, appropriate sexual conversations, you as the parent, want your children to have those conversations, I would think so this conversation about how your child came to be to me is, is part of a piece of like good parenting and the conversations that you need to have with your child. If that helps frame it kind of in a slightly different way. Sometimes parents hear that that can help them through the telling process. Have you found that one of the motivating factors to not tell is because the non genetically connected parent feels that they will somehow be lesser than in the child's eyes? Yes. Oh, definitely. Definitely. I think it gets back to some of that grief that we talked about earlier, that kind of working through that grief and loss and coming to terms with that themselves. I think I think that the non genetic parent, if there is one in the family, I think these telling conversations, that parent really needs to be part of that, if at all possible, perhaps not all of them as an involved, because we do see that, at least in our current research that we're looking at children tend to look toward the female figure in the family, the mother figure for this information. children seem to be a little bit more comfortable coming back to the mother and asking questions, not in every case, but it seems to fall on that kind of female figure in the family.

44:22  
Well, it could also be that the female figure in the family is more willing to step up and have the conversation as well.

44:29  
That could be a possibility to so I think that oftentimes the the fear that is motivating parents to not tell or postpone telling. And the problem with postponing is it gets harder and harder. And so that's how we end up with families who think they were going to tell but just never got around to it. I think one of the fears is that the child will will somehow feel how will the child feel about donor conception so

45:00  
What does the research that you've seen show about how donor conceived children feel about being donor about donor conception? You know, some of the studies that we have that are coming out and granted, we haven't looked, you know, at a huge amount of donor conceived children moreso are conceived adults. But when children find out early, and from their parents, that puts them in, in the best possible scenario for finding out in those children tend to do really well. And eventually, kind of except how that came to be. It's, I think, children that or adults that find out kind of accidentally, you know, unintentionally, in various different ways that seem to struggle and have more trauma, I think associated with how they came to be then then others who have found out from their parents, often early, and also, I would say, like, kind of involving, in continuing to talk to children and tell children about how they came to be, for example, from our donor conceived adults, we found out that some of them, for example, say things like, you know, my parents sat me down when I was 10. And they told me, I was on it and see, say, born from a donor sperm, but then my parents never ever talked about, again, it was like never brought. And you know, that as this child grew, they said, You know, I had all these questions, I kind of wondered about some things, this move in. So it's not just telling, I guess that's what I'm doing. I think it's just trying to help parents understand. It's, it's not a one time process. And it's to continue to bring it up. And in some children to if I could just say quickly, some children will ask a lot of questions and are, you know, have families where it's very common to approach parents, with other children may be more introverted, and may not ask. And that's where it's really helpful. If in those situations, if parents can bring up things, like you know, I'm I'm noticing that you really like to play the piano. And you know what, I think the donor, stated that they really enjoyed music, and they weren't musician. So kind of thing. Some of those next, as the child develops, puts me in the best position for about that makes sense. What about the role of children's books and helping parents and kids both normalize and open up normalize the donor conception as well as open up the conversation? Well, what we know from talking with parents is many parents are using these children's books, it's actually a strategy, in my current work on trying to educate parents, it's definitely a strategy that I recommend. I choose it, because I think some of the parents, or many of the parents do struggle with language, like we tell. And a lot of our parents are somewhat isolated, they may not have like a donor sperm parent next door to them where they can kind of ideas around. So I do recommend, if at all possible that parents obtain some children's books, either through their library, they can get them or they can. Today, nowadays, you can order them on amazon.com. For example, here it's made, you might even want to order a few of them, and kind of decide which one kind of resonates for them and their family and kind of put that in circulation. Especially if their child is young. It helps parents to with that language backward conversation going now there is if your child is a little bit older, for example, young adult age, there aren't a lot of books, but there's one offhand I would recommend and that's the arch. Oh, one book, I don't know if you're familiar with say that again, please. It's put out by the donor conception network over in the UK, I believe it's a title of it. It's something like Archie Nolan child detective, or teen child detective interesting. My team and I actually read this book, you'd like to read the books to know what's out there and available to parents. And I think Archie is, let's see, like he's nine or 10 years old. He's like a twin. And he found out that he was like donor conceived. Of course, his twin sister is all fine about it. And he's kind of struggling with it. And he writes about it in this book. And I think it's a nice book for parents that might want to, they might want to read it themselves is what I would recommend, but if they liked the book, then they might want to consider giving it to their child when their child is kind of around that age.

50:00  
especially if they haven't started those early conversations when their child was early, because it brings up some different points and talking points that parents may want to have in those follow up conversations. And even if they have talked to their child, it's still it's a great way of, there aren't many, I'm glad to hear of this because there aren't many books for older, older children and tweens and adolescents, right? It's a good way of reintroducing and opening up the conversation again, because you're right, one of the tendencies is to have air quotes around the world, the the conversation, done it checked it off the list, they're told, don't ever have to raise it again. And that that's not how this works, and not in a not in the best scenario. So this could be a an opportunity. One of the disadvantages of waiting to tell children is that is that there aren't books. And in after a certain age, if you could read this book aloud with your child, some kids are receptive to that, and some are not kind of depends on how you've done that throughout, you know, continue to do read aloud. But anyway, it's I'm very glad to hear I have not heard of this book. So I'm very glad. So what role do you think infertility professionals, especially nurses, can play in disclosure decisions for infertility patients who were using donor conception? I think they can play a huge role. I think nurses are the most trusted profession, there's many of us. And I know from my clinical practice, I would have patients that were meeting with the doctor, or the doctor may be recommending, you know, sperm donation or on a donation as a treatment, and then they would come back and see me and they would say, you know, Dr. So and so is recommending this, Patricia, what do you think? And also, if I use it, gosh, how am I going to tell my child or, you know, how am I going to tell my family or Yeah, how's that gonna unfold? So I think nurses are in a key position also, because what we see in the research is, sometimes parents need to process information over time, sometimes you from yourself, when you are seeing a physician or practitioner, you get information, but you may not hear it, well, sometimes hearing it in a different way. Or another way, having time to process it is really helpful. So to me, this makes nurses and nurse practitioners in key education positions, and one of the first things that I would say that nurses working, for example, infertility clinics, are in pediatric clinics, and they know that parents have used successfully a donor gamete, they may just want to assess where is the parent in that timing process? So you might just say something like, I see you've used donor sperm, if you told your children or where are you kind of in that process? Or if they're just pregnant or early pregnancy, you know, kind of, are you? Where are you in that process? Are you thinking about it, you kind of find out where the parents are kind of what the parents are thinking. I think that's a great starting point. And then as you mentioned, nurses are in a key role where we can add some strategies about killing for example, if you're, you know, many parents are using children's books. I did a talk recently with the nurses professional group at the American Society for Reproductive Medicine. And I actually recommended that nurses and fertility clinics, consider getting some of these children's books and have them at their clinics, so they can then show parents because these books have been evolving over the last several years. And we've now gotten it to where we have some books that are targeting like lesbian couples or single moms or different ethnicities, the different age so to me if nurses have these books available just can kind of show parents and give parents an idea of what's out there and then allow parents to make your own decisions. Further, I think that they should buy some of these books and give it as a present. There you go. I like that. Yes, I'm pregnant. Yes, your congratulations, you're I think that's what they should do. Let me throw out

54:30  
a creating a family has a lot of resources on talking with children about conception you could get to it by our website, creating a family.org Scroll down and then click on the big block for infertility. Click on that. It takes you to our infertility guide. Scroll down until the after conception and click on talking with children about conception. There we have a list of suggested books of children conceived we break it out through fertility treatment sperm donate

55:00  
Shouldn't egg donation, embryo donation and surrogacy. And it's broken out by age of the child and we give a short review of the book. So you can find books. In order to suggest there, we also have lots of other resources, tips about talking with kids. Anyway, lots of things as well, there at that website, have in your research, and when you're working with helping families, what do you suggest for nurses or anyone who's working with families to help families get over their hesitancy? Is there a script? Is there a particular book? Or just are you more general suggesting that that makes her they talk about missing pieces, you gave us the the criteria, things to focus on?

55:49  
Yeah, thanks for asking. I mean, the current work that we're doing the research study that's going on now is more of a deep dive down into kind of teasing out some of those pieces about the selling process, as well as strategies that parents can use, we can offer several strategies such as children's books, there are other strategies as well. For example, parents have children that are a little bit older, or say around 1213 years old, and they haven't told but they're wanting to tell, we can use, we talk about in our research, or look at parents using like what we call a lien in strategy, where parents can kind of lean into a conversation, for example, on television, there might be a story about donor sperm or something that's in the news. And parents can then use that to leap to kind of start a conversation with their child. Such as you know, there's been something there's been some information that your, for example, your father, and I want to share with you. We now think you're old enough to understand. So we, you know, we'd like to share this information with you leaning into conversations is another strategy, especially for older families. Yeah, that makes sense. One of the challenges I would think to that approach is, there aren't a lot of stories or the stories that it seems like on the news or whatever. There might be movies, but there aren't a lot. It's oftentimes the stories that are on the news, or somebody having found out late in life, and are not late later in life to finding out and that may not be the most productive. I don't know. Yeah, I mean, it's it seems right. Or something, you know, sometimes you see on the news that, you know, a sperm donor has, you know, so many offspring. So I know, yeah, leading into that conversations a bit difficult. It feels Yes. But I think I think if it helps prompt those parents to make that conversation, I think then you know, then it's, then it's a good thing. Yeah. Movies might be where you if there could be a movie that would have something, you know, where there would be or a book or something like that, that would have a slightly more positive spin. You may want thinking of this, what, what might work for many parents too. And what we're seeing is that if there's a movie on infertility, not perhaps necessarily that a donor Kami, or donor embryo was used, but just to kind of put into context, how, you know, parents were struggling with infertility, and they, and this is what they did. Parents can then build and lean in on that information that I think makes up kind of a nice background for helping their children understand and parents can then say, if it's true, you know, I wasn't even sure how to tell you, you know, or it was it was I was sad that when I found out that I was infertile, but I'm so happy that we were able to have you in this is our family's story. I think also framing it from the point of this is our family story versus our you know, the child's story. Isn't isn't way another strategy that can be very helpful to parents. That makes really good sense as well. Excellent. Well, thank you so much, Dr. Patricia Hershberger for being with us today to talk about disclosing donor conception or surrogacy to our kids. I truly appreciate

Transcribed by https://otter.ai