Families’ Experiences of Sharing Information about Donor Conception -

by Professor Eric Blyth - Talk at DC Network meeting

My talk this morning is based on a UK research project involving families recruited through two support groups for families who have used donor conception, Donor Conception Network and the Daisy Network. We specifically focused on families where the parents had told their children about their conception.
So I wish to acknowledge my thanks to Donor Conception Network and the Daisy Network and to my co-researcher, Dr Darren Langdridge , formerly at the University of Huddersfield and now Lecturer in Psychology at the Open University, England and to Vicky Thompson who conducted the interviews

We did the research because previous research into the experiences of families that have used donor conception indicates that most parents of donor-conceived children do not intend to tell them about their conception.
Consequently, little is known about the experiences of families where children have been informed about their origins. Previous research has also relied heavily on mothers as sole sources of information, therefore excluding the experiences of fathers of children to whom they are genetically unrelated. And self-evidently, these studies precluded the involvement of donor-conceived children. So our project was specifically geared to exploring the experiences of both parents and children where children had been told about their conception.
We interviewed sixteen families headed by a heterosexual couple. Fourteen of these families had used sperm donation and two families had used egg donation.
In thirteen families both parents were interviewed; in the remaining three families the fathers were unable to be interviewed. These families included children ranging in age from 1 year to 18 years, and fifteen children from twelve families were interviewed (ten boys and five girls, aged between 5 and 18 years; mean age = 9.8 years). All of these had been conceived following sperm donation from an anonymous donor since the children conceived following egg donation were too young to be interviewed. I will be drawing extensively on what people actually told us, so I need to make clear that all names have been changed to preserve confidentiality.
I have deliberately included as many direct quotations as possible and since both parents and children told our researcher, Vicky Thompson, some amusing things. I have tried to include as many of these as possible – without trivialising the serious messages highlighted in this study. One of the fathers, Kevin, was talking about his nine year old son, Alex’s lack of interest in his conception: ‘One of us would bring [My Story – a book ] out again from time to time. Not that he …. asked for it or anything. He was “oh I don’t want to read, I don’t want to hear that story again”. Kevin goes on, “I’m quite impressed when I read all these people who’ve had these in-depth discussions with their seven-year-olds .... How the hell did they manage that? Alex wants to go and play [on his computer]. He doesn’t want to chat to me about his genetic origins.’ Well, we found that seven year old. She is called Abigail. Vicky asks Abigail if her mum and dad talk to her about her origins: Abigail: Hmm, sometimes. Vicky: Do you ever bring it up out of the blue or ..? Abigail: Sometimes the subject just comes up. Usually it’s a bedtime delaying tactic. Later in the interview Abigail tells Vicky that ‘every year I go to this play place for special children while the grown ups have this long boring chat about should they tell their children or not’. Here’s Chris talking about his six year old son, David: ‘... we had some dispute over how much of a bedtime story I was going to read to him, and he considered it wasn’t enough, so he said to me as I went out of the room, “anyway, you’re not my father”. So I said “oh really”, I said “who is, then?”. So he said, “somebody somewhere else”. So I said, “oh” and then he called me back and he said, “I’m sorry daddy”, he said “I’m sorry. I wish you were my sperm father”’. Emma describes a visit to the gym with her five year old daughter, Joanne: ‘she was sat on the counter talking to a lady there and ... she said “I’m a very special baby, I am”. Just suddenly come out with it, you know. And the lady says “oh are you darling? All children are special, though, aren’t they?” She said “yes, but I’m very special ‘cos I’m a donor baby”, you know, “oh no! It’s a good job I want this strange lady to know, isn’t it?”’ Lyndsey recounts her brother-in-law and his pregnant wife coming for a meal: ‘we were talking about the baby and all of a sudden, Christian (her 4 year old son) said, “so Uncle John’s sperm were working okay then?”’
So let’s move on. What have we learned from the research?
First, we asked about decision-making about telling the child. Many parents made this decision very early on. People talked about there never being any question of not telling their children. Family and friends often already knew about their fertility problems and treatment - so keeping information from their children was not an option. Those who informed friends and family later on recalled both how relatively easy the telling had been (despite initial apprehensions) and how they wished they had opened up much earlier. Andrew: ‘looking back, I don’t know why we didn’t tell family and friends earlier …… but in the past it was a bit different so you were a little bit more careful about who you told and …. you were a little bit more careful about your children being almost labelled with a stigma as being “test-tube babies”’. Responses from friends and family were generally positive. Common themes reported were interest, delight at being told, ‘incredibly supportive’. Kevin said, ‘people have actually said “well thank you very much for telling us that”, you know. They realise that it’s quite something for us …. it’s an important thing for us to share with them’. However, several people spoke of some relatives’ and friends’ evident discomfort and perceptions that this was something not to be talked about. Alison said: ‘some just didn’t understand it, wanted to move on and talk about something else’. Lisa said, ‘my mum doesn’t agree with us telling them [the children]. My mum thinks we shouldn’t have said anything’.
The most extreme responses were reported by Lyndsey. Her aunt told her ‘that she thought it was disgusting and, you know, shocked that we could possibly do anything like that. When I told my GP that we were being open and were going to tell the children he turned round and said “you’re wrong …. you’re wrong, you’ll damage your children ..... I think you’re completely wrong to do that.”’
Advice from clinics on whether or not to tell children was mixed: some couldn’t recall getting any advice, others said they had not been advised either way, some said they had received more or less strong messages towards telling, some recalled surprise among clinic staff of their intention to tell their children and some recalled clear messages not to tell. Lyndsey said: ‘when I asked [consultant] whether or not to tell the children he said “absolutely not. You must never ever, tell the children”. He said “if you do that you’ll psychologically damage your children. The only people that tell their children …. they’re doing it for their own selfish needs” .... [Consultant] said “I’ve been doing this for 20 years and I’ve never had any parents question what I say”. When I asked about counselling he said, “what do you need counselling for? You’re going to have these children and bring them up as your own, if you don’t talk about it to anybody at all and you just accept them as your own children you’ll just forget about it, there’s nothing to know”..... I was very, very unhappy about it from the start ..... but we just thought well if, you know, if I get pregnant and have a baby well then all these issues about secrecy and not telling and, and telling and all the rest of it we can deal with afterwards; but in retrospect that was totally, totally wrong. I mean you have to deal with these issues beforehand ... .... I kept asking at the clinic “there must be information, there must be some books, there must be some research”. Every time they denied everything, absolutely flatly denied that there was anything to read, any literature, that this, you know, “nobody ever told. Why do you want to tell the children?”’ While some respondents made it clear that they were set in their minds and any advice to the contrary would have been ignored, Lyndsey’s experience illustrates the power of clinics to influence people who feel less secure.
Lyndsey actually refers to her contact with DC Network as ‘a life-changing moment for me in a way ….. there were people who thought exactly the same way that I did and they ….. were a bit further down the road and talking to them, and they had a lot of books and literature on what’s available and I found that very very helpful, you know. I could read these things and it explained how I felt about it, which is something I haven’t worked out before by myself …’ When giving their reasons for telling their children parents referred to being honest with children, children’s rights to know, the stress of maintaining a lifelong secret, that lying was hardly a secure basis on which to establish family relationships and also the prospect that children would find out anyway (especially as friends and/or family already knew) - and if children thought their parents had lied to them about their conception, they might wonder whether they had also been lied to about other things.
The importance of truthfulness between parents and children was also cited by several of the children too. Abigail (again): ‘They weren’t going to tell me at first but then they changed their minds suddenly. I can’t remember why, but they just changed their minds. I don’t really know why they decided to tell me. I think it’s just ‘cos they thought I deserved to know’. Ben (18) said his parents were: ‘just incredibly honest, refuse to lie ….. they won’t lie about anything..... It’s something that, it’s something that if, if you’re not told is hugely important and something that can disrupt a family and has mass importance, but if you are told, has no relevance to your life or importance at all really in the grand scheme of things’. If there is a consistent story to be told about how children were told, then it would be the story of My Story. 26 of the parents and 4 of the children specifically mentioned My Story and this featured strongly in the accounts of telling. (So one could anticipate that the Our Story books will provide useful resources in the future). This struck me as important in the light of Cook et al’s 1995 research which showed that one of the reasons given by parents for not telling their children was the lack of an appropriate ‘script’. Ian said ‘We used the My Story book quite a lot and tried to sort of introduce, the main difficulty is their, their lack of interest in it …. You start to realise that it’s only going to be important to them when it’s important to them. And it’s not necessarily going to be important to them when you want it to be, when you’re ready to talk about it’. Some parents started to tell their children before they thought they could really understand what they were being told. Most parents appear to have told their children by the age of about 4 (including the couple who had received the strong injunction not to tell - so no real time was lost here). Helen , recalled doing so ‘when they were three maybe. About the time that they liked looking at storybooks and you can be fairly confident that they’re not going to tear them up or eat them’. Many parents made the explicit point that there was not a moment when they decided ‘today’s the day’; several intending that their children would not subsequently be able to recall a time when they didn’t know - a successful strategy according to the accounts of several children. Alan (14) said: ‘all I can remember is that I’ve always known …. There wasn’t a point where it was “right, sit down, Alan. We have something to tell you” …. [so] … it hasn’t really ever bothered me...’ Gary (10) couldn’t remember when he was told: ‘I was very young so I wasn’t really amazed by it’. Paul (10) also says: ‘it was so long ago I can’t remember exactly when, but they got me a book and I used to sit reading it when I was like four, five, and, I think it was five’. There’s always an exception to the rule and five year old Joanne, whose parents had said how they read her My Story, confidently asserts: ‘Well, I was eating my breakfast when I was about three and Mummy said “I’ve got something special to tell you”. And I said “what?” And Mummy said “you’re a donor baby”. And I felt really excited.’ A theme emerging from analysis of the interviews, but which was not an explicit question we asked, is the notion of ownership of information about donor conception. This manifested itself in several parents’ accounts of telling other people.
Once immediate family and friends have been brought within the ‘information network’ there seems to be a perception that this is no longer parents’ information to disclose to whomsoever they wish. Jon summarised this: ‘if anything we’re a little bit more circumspect simply because I think we both feel that it’s [our daughter’s] information really ..... I feel that [she] is entitled to keep the thing confidential or to herself if she wishes or to tell other people similarly if she wishes.’
Nicola referred to a tension in this: ‘it’s all very well saying I want [my daughter] to know first and I want her to give me permission to tell people, but at the same time I’ve therefore inadvertently given her the opinion that it’s sort of still something secretive that, that, that you decide whether to tell someone’.
We asked about the availability of donor information. Over time there seemed a general increasing awareness among parents of the inadequacy of this information for their children (even though several thought that the limited information was sufficient for them as parents) and several had either already sought more information from the centre or were planning to do. None of those who had obtained further information thought that this was really adequate but also realised that this was all that their children were going to get. Several commented that getting donor information had not been a high priority at the outset when their main concern had been to achieve a pregnancy at all. Several also referred to the fact that they had been unaware at the point of receiving treatment that they could ask for any more information. DC Network support had evidently steeled some people to return to the clinic to request more information. At the time of interview all parents who had told their children had given them all the donor information they possessed. The lack of donor information appeared not to be a major current problem (and I stress ‘current’) for any of the children.
Two of the boys indicated their lack of interest in their donor. Ben said: ‘I’m, I’m afraid to say, deeply uninterested in my donor’. 14 year old Alan said that ‘the last thing I wanna do’ is meet my donor ‘’cos I’m so close to my dad is to give across the impression that maybe he isn’t good enough or that I need something else because I’m perfectly happy how I am’. There is some suggestion here, though, that Alan’s views are influenced by feelings for his father if he were to show any interest. Several children did specify donor information they would like, including his eye colour, any sports interests, any similar characteristics to the child age, what he looks like, whether he has any children – and his name. As you have come to expect by now, Abigail’s interests in more information bordered on the exotic: ‘I just want to know who he is really .... Not where he lives so I can’t just go bursting in on him, you know .... I’d just like to know what his name is, stuff like does he think about me often, stuff like that. What sort of nightmares does he have, stuff like that. Does he have nightmares at all? Stuff that grown ups might think are extremely weird.’
Helen said that her 5 year old daughter, Joanne ‘wants to swim with a dolphin, stroke a bear and meet the man who gave the sperm that made her’.
15 year old Gemma recounts that ‘when I was like 11, 10, when it first came to me that I would never find out who my donor is ..... it was really upsetting for me ….. whenever I thought about it, it made me quite sad but sort of, by now I’ve come to …. realise I’m not going to ever find out. That’s the way it is and I have to accept it.’
We wanted to know how parents and children viewed the lack of a genetic relationship between the child and his or her father. Parents had ranging views on the importance of the absence of a genetic link with the child. Most said that they didn’t feel strongly about it. Some men felt that their children would benefit by not having their genes – sometime this was mentioned jokingly but some men mentioned serious health conditions that they were relieved would not be inherited by their children. Several people (including children) reported disappointment and/or sadness at the lack of genetic relatedness.
For example, David (8) recalled that he ‘might have been a bit disappointed ‘cos I didn’t have my dad’s genes’, and one father expressed his regret that he would not be able to be a tissue donor for his daughter in the event that she would ever need this. However, all those we talked to were also clear that it was possible to build strong relationships in its absence.
The fact that children felt wanted and loved, children being healthy and happy and parents having the time and energy to bring them up, positive relationships, were identified as being important in place of a genetic relationship.
Lyndsey said: ‘I think that the realisation that actually you don’t need to have a genetic link to be able to love them as much as you do’.
Based on these children’s responses, no parent should fear the consequences of telling their child. While we have seen that some children expressed sadness or disappointment and occasionally used the lack of a genetic link to ‘get at’ their fathers, the two major reactions of these children were to stress either their normality or their ‘special’ status.
Gary (10) said that he was ‘very young, so I wasn’t really amazed by it’.
Paul (10) said ‘I know I’m different to lots of other people but I really don’t mind. I mean, I’m a boy like any other boy and that’s fine by me’.
Joanne (5) said: ‘I’m still a person’. Joanne also said: ‘I jumped up and down. I said “Wowww’. And I got really excited.... Because, because not many, because not many children are donor babies’.
Gemma (15) ‘loved the idea that I was very special. I thought it was really cool.... I’ve always been an attention seeker so when I was little I was always just like, “everybody look at me, I’m the special kid…....”’ .
Abigail (7) didn’t remember how she felt on being told ‘’cos as I told you it was about when I was three or four so I don’t really remember’. However, she recalls feeling different ‘because … I wasn’t made from dad’s sperm which isn’t much to me, not anymore. ‘Cos it used to be, ooh big deal, big deal, ooh, huge deal and now it’s not much at all’. Vicky: ‘So it used to be a big deal to you did it?’
Abigail: ‘Well it used to be. For about two days. And then it just sort of started to wear off….. I think that was when I was four’.
Patrick (8) said he felt ‘a little different ‘cos well, not many children have this happen to them.’ No parents had any regrets about telling their children and none of the children said that they wished they had not been told. Several parents spoke that it might have been easier for the children had they not been told, but that not telling would have been neither fair nor realistic.
Lyndsey said ‘There’s, occasionally a part of me that says, you know, ….. if we could have not told our family and friends, completely obliterated it from our minds and just brought them up as our biological children, it would have been, you know, could we have done it that way? But realistically I think that’s just denying, denying that we had a problem it’s, it’s just wanting to … put …. all the painful bits away’. We wanted to know if – and how – parents felt about any responsibilities they had placed on their child by telling them about their origins.
We found a range of responses:
Helen said ‘No because it hasn’t worried them. If it had worried them, if it had caused them some anxiety then I might well have felt that, but it hasn’t so I don’t’.
Ian felt ‘some responsibility of having put them in the position of being conceived in the way they were conceived, but at the same time I didn’t have a choice about that .... I mean obviously I, we put them in that position by deciding to have children, but having decided to have children we then couldn’t decide how to have children, it wasn’t, we didn’t have that choice as it were. The choice was to some extent have children like this or don’t’. Katie, though, worried about her son’s lack of interest ‘You know, it’s almost like he’s bored but I think is he saying that because he’s just trying to be brave about everything or does he really feel different or strange? So I do worry, yeah. And I worry that he’s, it’s going to affect his, his whole life …’
Pauline said ‘I think it did occur to me slightly earlier in their lives that we might have put them in a difficult position by knowing but not being able to have access to information about the donor, but now they are old enough to have their own opinions about it they have said very clearly that they felt we were absolutely right to do so. Both of them say that, completely unequivocally. So I feel completely vindicated.’
Lest I leave you with the impression that everything was rosy in the families we talked to, it needs to be said that there was some parents did not always see eye to eye on what and who to tell. In some cases modest levels of disagreement that couples felt sufficiently at ease to talk to us about were made explicit. Children were sometimes aware of this.
Angela said that her son: ‘winks and goes “daddy doesn’t like talking about it does he?” and I say “no he doesn’t.”’
Stuart said he had gone along with his wife who said that ‘having done the research current best practice was to tell the children.... If somebody’s been there and done it who am I to argue? So I’m Mr Compliant, you know’.
It also needs to be acknowledged that families where there are major levels of disagreement or other tensions around donor conception are probably less likely to agree to take part in a research project focussing on such sensitive issues.
Finally, we wanted to find out what people would do differently.
Most frequently mentioned – probably not surprisingly – was to get more information about the donor at the beginning.
Other suggestions were: To tell other people earlier To discuss it with the child earlier To make the story less complicated.
Angela said: ‘I think we made it too complicated when he was young. I think he was a bit bewildered and confused by the amount of technical information we were trying to give him, so I think I would simplify and also I ….. would take a bit more care to, to do it more simply, I wouldn’t start it any later but, but to check out the child’s understanding as I was doing it’.
Lisa would like her husband to have been more involved in explaining to the children
Arthur said ‘instead of the focus being on the child’s story, the individual’s story, telling the story more as the family story’.

So in conclusion…..
Like any responsible researcher I need to acknowledge the limitations of the research. I have reported on discussions with only 14 families after all, so I am not claiming that these families’ experiences will be replicated among the thousands of families worldwide that have used donor conception.
The study shows that lack of donor information appears not to be a major issue for most children, although it is evident that it has caused distress to some children in the past and we clearly cannot predict the future. We now know a bit more about the government’s intentions regarding collection and release of donor information and we will be looking at this further today.
This research shows that parents can choose donor conception safe in the knowledge that if they tell their children there is little risk that their children will hold this against them. This is not just a confirmation that it is safe to tell, that the presence of a secret will inevitably impair relationships, but an affirmation that, as several people specifically mentioned, telling children can bring families closer together.
It is only appropriate that the final words should be from one of our research participants: ‘as it’s turned out so far, this has been an extremely …… not just second best and not even just another, but a very positive way of building a family’.

Reference
Cook, R., Golombok, S., Bish, A. and Murray, C. (1995) Disclosure of donor insemination: parental attitudes, Am. J. Orthopsychiat., 65, 549-559.

Acknowledgements
I wish to thank Vicky Thompson who conducted the interviews and to my co-researcher on this project, Dr Darren Langdridge , formerly at the University of Huddersfield and now at the Open University.

The Author
Eric Blyth is Professor of Social Work at the University of Huddersfield . He has researched and published extensively in the field of assisted conception for over a decade. In addition to the research on which this paper is based, he has undertaken research involving semen donors, participants in surrogacy arrangements and egg sharing. He is a member of the Project Group in Assisted Reproduction (PROGAR) established by the British Association of Social Workers and co-editor, with Dr Ruth Landau, of Third Party Assisted Conception Across Cultures: Social, Legal and Ethical Perspectives (2004) published by Jessica Kingsley Publishers.

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