Donor Conception Network - Articles
Families’ Experiences of Sharing Information about Donor Conception - 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.
