Parenting donor conceived children: Is it different?

Twelve years ago I gave a presentation at one of DCN’s national meetings on this topic.  I just came across it again as I was continuing to rifle through the personal stories on the web site towards transferring the most relevant ones to the new site and thought I might share excerpts of it here.  Walter’s and my children were 16 and 13 at the time.  When reading you need to take into account that it is a transcription from speech.

“Let’s tackle this question head on. Is parenting a child conceived using donated eggs or sperm different from raising children where both parents are genetically related to the child?… Did you really think there would be a straight forward answer to this question? Well no, of course there isn’t. On the one hand it’s just the same, requires the same conditions, understandings, skills and information as any other parent. At the other end of the scale, it’s fundamentally different. As parents, or potential parents we have had to face making decisions which will have an impact – little or large – not just on us or our children, but over generations. The uncomfortable truth is that very few of us would have chosen to have a child in this way. We would have preferred to have the child of the person we love and live with. The delight and joy at being pregnant/giving birth/raising the child is likely to be tempered at one time or another by sadness that this is not the child of the person we love: for me – not the child I had in my mind when I imagined what OUR child would be like. For some people using DI or egg donation, this acknowledgement of difference happens when the child is quite young -the complete lack of physical resemblance to the non-genetic parent, the emergence of traits which seem to come from no-where. For me it happened slightly later. Our first DI child had been a difficult baby and a hyper-sensitive toddler and child. When he was seven or eight I went through a period of finding it very difficult to relate to him. It was only when I realised that it was because he wasn’t living up to my fantasy of what I wanted our child to be like – he wasn’t displaying the qualities and talents I had wanted a child to inherit from Walter – that I was able to mourn the child we couldn’t have together and accept our son for the truly lovely person he really is. I could not feel closer to him now.

Of course, fantasies, imaginings, wishes and unrealistic expectations are part of every parent’s repertoire – no matter how their child has been conceived. But perhaps for those of us using donated eggs or sperm, there is an extra dimension which has both plusses and minuses. On the minus side, we have to accommodate the lack of hope that a child might develop something of his father or mother’s looks and talents: accept that we can never make a family connection on the non-genetic side – and it’s amazing how much extended family conversation in particular revolves around who looks like who and where various talents (or horrible habits) might have come from. On the plus side, however, we have the real opportunity to put aside all those unfulfilled ambitions of our own that we secretly want our children to take on, and to accept each child for the person that they are. By using standard good parenting skills to stimulate the child’s curiosity in the world around them, nurturing interests and talents as they emerge – and most important of all, providing a balance of warmth and nurturing with clear boundary setting, our children have the best chance of feeling secure and having high self-esteem. A child who feels good about his or herself in this way is not going to let anyone bully them about being a DI child – viz our daughter at age of nine when an attempt to do this by someone at school fell at the first post because it didn’t press any ‘shame’ or ‘hurt’ buttons for her. I am not, however, talking about being ‘a perfect parent’. This is a trap we can easily fall into because our children are so wanted. We absolutely do not need to feel guilty at being infuriated, yet again, by our much sought after children.

…What of the future? Walter and I assume that at some point both our children will go through a range of feelings about their inability to know more about one half of their genetic inheritance. These feelings may range from sadness to real anger at having this information denied them. It is our guess that this may not happen until they are quite a bit older, possibly contemplating having children themselves and/or doing a mid-life stock-take, making family connections etc. Although they will be autonomous adults by then, what they will be going through will be the result of a decision Walter and I took many years before, so I think we have a duty to be there for them, emotionally at least, for the duration. I don’t think it would help to feel guilty (as I know at least one adult offspring’s mother does). Nevertheless we have to accept responsibility for the decision, and support our children whatever way we can, although we cannot be ultimately responsible for their happiness or success in life.

To sum up – our families are both the same as, and different from, those where children are genetically related to both parents; and different again from families formed in other ways. Avoiding that fundamental difference is I think avoiding facing a real truth and in the end, denial like secrecy, can only get in the way of relationships. But we also have to be kind to ourselves. Many of us carry baggage from our own upbringing which make us shy about acknowledging, even to ourselves, the implications of conceiving and raising the children of egg or sperm donation. Adult DI offspring, however, are very clear that straightforward and honest relationships in their childhoods would have helped them grow up more confident human beings. So for our childrens sakes we need to be able to manage the mixed feelings – acknowledging and accepting the sameness and the difference – and relate to our children and others in ways which will give our children the security and self-esteem to feel comfortable and confident about their place in the world.”

Well, Will and Zannah are now nearly 29 and 26.  They still feel pretty similar to the way they did twelve years ago, although neither of them is contemplating having children themselves yet.  Zannah has added a perspective on genetic determinism and DC adults sense of agency that has come from her Anthropology degree.  Will thinks medical info might be a good idea and that whilst parents should absolutely be encouraged to tell children and undergo preparation for DC parenthood, nobody can force them to do it…and children might suffer if parents did so under duress.  They said as much to the Nuffield Council on Bio-Ethics last week.  We are so proud of them both.

Testing the trust: telling family and friends about donor conception

Well, DCN will have the money from the Nuffield Foundation next month so my work on the two Friends and Family booklets will start in earnest then.  But I already have quite a fat folder of cuttings and downloads from emails and blogs about this issue and am only too aware that it is one that donor conception families stumble over, even more than telling children.  We are doing two booklets so that would-be and existing parents have one for themselves to help share information with family and friends – and deal with their responses – and another for DC families to give or recommend to those close to them to help them understand what they are (or have been) going through and what is most helpful to say or do to be most supportive.  As Alice Ruby from the Sperm Bank of California wrote to me when I first publicised the idea of these booklets a couple of years ago, DC families need to be prepared to educate others.  The problem is that when you are feeling pretty vulnerable going through the rollercoaster of treatment cycles, you don’t much feel like being the wise educator of your own parents and best friends. You just want them to instinctively know how to be and what to say, but this does not come easily to many people.  Alice’s straightforward advice to DC couples and individuals is, ‘Ask for what you need’ and to their families and friends, ‘Think before you speak’.  If only this were always possible!

One thing is true though.  The longer a secret is kept the harder it is to tell because it means admitting to long-term deception.  This applies as much to family and friends as it does to children.  Secrets also fester in corrosive ways, destroying spontaneity in families and causing relationship breakdown.  But just because it is healthy for close relatives and friends to know about the role of DC in the creation of a family, this does not mean that every time someone in the supermarket comments on how much your baby looks like you or his dad, you have to blurt out that s/he is donor conceived.   Unless it is the shock effect you are going for, then your kindly commentator is likely to be taken aback by the result of their rather everyday remark producing information about how the baby was conceived!  It is a rare person who shares this information with anyone, let alone a stranger.  In fact an American counsellor friend of mine has suggested that self-conscious ‘telling’ of everyone may convey as much a sense of shame as not telling anyone at all.

A measured, self-confident, matter-of-fact conveying of information to those who need to know is likely to bring forth a response that is equally calm and hopefully supportive.  For those who don’t, then bland thanks or euphemisms will do.  This is one of those occasions when the truth is not what is most important.

If anyone reading this has stories about talking with friends and family – either positive or negative – that they think it might be helpful to have included in one or both of my booklets, then I’d love to hear from you…particularly if they illustrate a wider point.  Do please indicate your interest in the comments space below and I’ll be in touch.

Thoughts about egg donation and ‘telling’

An issue that has been rumbling about in my mind for a while came up unexpectedly at the DCN Trustee/Steering Group meeting on Saturday.  Are families where egg donation has been used to help conceive a child finding it harder to be open with their children than those where sperm donation has been necessary?  This is a counter-intuitive question to me as my assumption has always been that a woman carrying a child by egg donation is likely to feel more confident in being a ‘real’ parent than a man becoming a father by sperm donation, simply because of the opportunity to contribute to the wellbeing of the child inside her and by the act of giving birth.  And confident parents tend to be the ones who are open with their children. But what if for some reason a woman isn’t feeling so confident?  What if during her pregnancy some clumsy person -professional or friend – has intimated that this is not really her baby at all?  Or perhaps the baby was conceived abroad and there was no opportunity to see a counsellor and reflect on the sense of failure or feelings of ‘unwomanliness’ that some women have when their bodies seem to have let them down.

In families where sperm donation has been necessary for conception women are used to their men going through a period of shutting down emotionally whilst they integrate the news of their inability to create new life biologically with their partner.  Women need to be nurturing and supportive, particularly in helping their partner to see that this news makes no difference to the way they feel about him – particularly as a man in the fullest sense.  In this way, over time, most men are able to accept their infertility and look forward in a very positive way to becoming a father in the only way possible…by donation.  Openness is the likely result when such opportunities for reflection, grief, nurture and the passing of time have been allowed for.

This is what women do in families.  They often do the emotional work for both partners, or at least take the emotional lead.  But when it is the woman who has the sense of failure to deal with, how is that to be managed within a heterosexual couple family where, on the whole, men want to fix things (so egg donation isn’t necessarily a big deal because it overcomes the problem) but a woman is feeling bad about herself?   These are stereotypes of course and there are many shades of grey within families about the division of emotional labour, but there’s a lot of truth in it too.  Women also tend to take the lead in families with anything to do with children so it is likely that introducing story books about donor conception would fall within their domain as well.  It begins to get easier to see how ‘telling’ in egg donation could easily be more difficult if a woman has unresolved issues about her infertility and lacks confidence in her right to call herself a ‘real mother’.  Rejection by their child, always the background anxiety for parents by DC, feels so much more likely if a woman (or a man) lacks confidence in the decisions they have made.

It feels important that counsellors in clinics should recognise that egg donation may be more problematic for some women than has been previously thought and encourage them strongly and empathically with the reflection/grieving process. Also in seeking emotional support, the need for which may not be understood and forthcoming from a partner, around telling children.  Within DCN, we will consider running separate ‘telling’ groups at our national meetings for those with egg donor conceived children and through our regular contacts with members try to understand more about their needs.  We have wondered for a long time if there would be differences between families and children conceived by egg and sperm donation.  Maybe we are just beginning to see them now.

 

All things Nuffield…and more

Last week was ridiculously busy so no time at all to blog.  Highlights were on Monday when Sharon Witherspoon, Deputy Director and soon to be Director of the Nuffield Foundation confirmed a grant of £50,000 for three, or perhaps four, of the nine projects we had put in funding bids for.  It was sad not to get all we asked for but in the current climate we felt lucky to be selected at all.  All four of the independent references that Nuffield sought in order to establish our credibility as an organisation were outstanding and we can be very proud of that.  Towards one of our funded projects I opened a conversation with one of our members who has experience with writing science based learning materials for children.  She will contribute her ideas and expertise to a meeting to be held soon to scope the writing of a book for DC 7 – 11 year olds, a group that at the moment is uncatered for.  This is a developmental stage at which children often become curious and need straight forward but age appropriate answers to their questions.  I then spent some very interesting time talking with a member of DCN who is a documentary film maker about updating our film A Different Story, featuring seven sperm donor conceived young people but made nearly ten years ago, and making a further film to include children and young people from different donation and family types.  We are so lucky to have so many very talented people within DCN.

Most of Wednesday was spent with ‘Zannah going through her dissertation on Donor Conception and Identity Formation, making sure the arguments were consistent and logical and the sentences weren’t too long.  She has had very positive feedback already from her personal tutor about this enterprise and I know was thrilled to have it finished and bound by Friday.  Well done Zan, nearly there!  You have done so well.  So proud of you.  Thursday and Friday played hooky from work to be with our beloved grand-daughter who at eight months is a bum-shuffling bundle of joy.  Her mum hasn’t been well recently and it was a pleasure to go and help.

Saturday saw one of the bi-annual meetings of DCN Trustee and Steering Group.  Important items on the agenda included both our Nuffield grant and our contribution to the Nuffield Council on Bio-Ethics enquiry into Donor Conception and Information.  A group of us, including two DC young adults, will be going to give evidence in person on Friday 27th April but we will also be submitting written answers to questions posed on their website as well.  The Trustee/Steering Group (which includes two DC adults, others being parents) cannot hope to actually represent all the shades of opinion that exist in the Network but we do aim to be informed by members views as we hear them.  Sometimes, as in the case of information about donor conception being included on a child’s birth certificate, we have to say that there are strong views held both ways on this topic.  No-one is against children being given the information that they are donor conceived as early as possible, but there are those who think that if parents (outside of DCN) do not take responsibility to ‘tell’ then the state should have a hand in this and others who feel that it compromises the privacy first of families (as birth certificates are mandatory for school entry) and then DC people to choose who should know about their conception.  A tricky one.

God and fertility

I’m treading on ground here that I rarely trespass into…that of religious faith and assisted conception, particularly donor assisted.  Yesterday I spoke with someone on the ‘phone who had had guidance from her religious adviser that embryo donation – ‘adoption’ was actually the language that was used – would be an acceptable way for her and her husband to pursue their wish to have a family, but that egg donation or double (egg and sperm) donation would not.  The idea seemed to be that ‘saving’ an embryo from possible destruction would be approved of by the church but that introducing one or more third parties into this couple’s marriage by using egg or double donation, would not be.  What was troubling my caller was how a child would feel about having fully genetically connected progenitors and siblings out there somewhere living a family life without them.  That somehow because of the luck of the draw, they got left in the petri dish, and then the freezer, whilst other embryos were chosen for implantation and went on to become that couple’s children.  Someone was thinking about the person to be conceived, even if the church did not seem to be.

We talked for sometime about this dilemma and other ways that she and her husband had explored of becoming parents.  They are considered too old to adopt in the UK.  Exploration of embryo adoption in the US had ended in blanks and it looked as if adoption of a baby from that country was not going to work out either, partly because adoption in the US is shockingly expensive.  Possibly adoption from a third world country was going to be the right way to go but, like many women, this woman would dearly love to experience the bonding process of pregnancy and to give birth.

What has religion to do with all this?  Well, clinically egg donation would be an option for this couple but as believers and adherents of a particular way of thinking, they would find themselves personally compromised by going against the teachings of their church and may risk being censured by their priest, or worse, if it was known that they had gone against the guidance given.  From my secular perspective it does not seem to be a very loving god who would stand in the way of a couple who wished to create a family, that presumably they would bring up within that particular faith.  And why embryo donation – with it’s dislocation of families – would be more acceptable than egg donation is particularly puzzling, but then the status of the embryo is not a troubling issue for me.

The American Fertility Association has produced some lovely pieces on issues of concern in assisted reproduction generally and third party assistance in particular.  I particularly like a recent one called Keeping Your Faith: How a Religious Framework Helps (or Hurts) You by Marie Davidson, a clinical psychologist on the team of a clinic in Chicago.

As Marie points out, as human beings we are connected to all our communities, our families, our social networks, our work colleagues and our faith communities.  They are all capable of helping or hurting us as we try to build a family.  The hurt can come from judgement and lack of understanding.  Some of the worst pain can come from the mouths of those you would otherwise look to to support you…”It’s God’s will” or “God has other plans for you”, “Doing what you want to do isn’t natural”.  I really like Marie’s reponse when a patient asks her, “Why is God doing this to me”…she says, “”I do have a God concept (ever evolving) and I think that if ‘my God’ is deciding who gets to be parents, then S/He has a really lousy track record”.  Most people will stop and think for a second and then smile and laugh – usually seeing how irrational it seems to think that God controls this being a parent thing.

Good stuff Marie.  Have a read and see what you think.

http://www.theafa.org/ekk_articlepage.php?sermonslug=keeping-your-faith-how-a-religious-framework-helps-or-hurts-you&slug=keeping-your-faith-how-a-religious-framework-helps-or-hurts-you&version_id=416047

So what is this National Donation Strategy Group?

Just before the Easter holiday began last week the HFEA held a press conference to launch their new National Donation Strategy Group.  The headline in the Daily Telegraph the following day, “Sperm and egg donation ‘should be like giving blood” caused some disgust and blood spitting amongst donor conceived adults on a Facebook book I contribute to.  Lisa Jardine, the Chair of the HFEA, to whom these words were attributed, has a habit of not getting it quite right.  I think she meant that opportunities to donate should be as easily and widely available as those for giving blood rather than a direct analogy between gamete and blood donation (which are of course quite different), but a later quote that she wanted egg donation to become “as obvious as blood donation” makes me wonder if she really understands the long-term implications of giving eggs or sperm to help create human life for another family.  Not only is egg-donation an invasive and uncomfortable procedure that takes place over several weeks but it means, if successful, that a child carrying the DNA of the donor will be brought up by someone other than the egg provider.  The donor must also understand that she must be available to that child in eighteen years time if the child chooses to make enquiries about her.  In the meantime she needs to keep her contact details updated and notify her clinic or the HFEA should there be any significant change in her or her family’s medical status.  This is NOT blood donation or ANYTHING like it.

The remit for members of this strategy group is -

“Increasing awareness of donation and the information that donors receive:  Improving ‘customer service’ that donors receive when they contact clinics and helping donors to provide better information about themselves for the families that result.”

Whilst these are laudable aims, and I am particularly concerned at the moment about the consistency and quality of information about donors that is available for recipients, I am disappointed that the HFEA do not seem to be taking the opportunity to open up a wider debate on the future of donor conception in the UK.  This should ideally take a broader look at the needs of all parties in the donation triangle with a view to informing not only current services but developing longer-term policies and services.

Applicants for the 12 to 14 places on this group are invited to submit a statement of their interest to the HFEA by 1st May 2012.  The statement should address the following questions -

Reasons for applying to join the group:  commitment to improving sperm and egg donation in the UK: particular knowledge or experience to bring to the group: declaration of any objection to assisted reproduction using donor gametes.

As the leading organisation for donor conception families in the UK and arguably world-wide, we will be seeking a place on the group and hope to influence a widening of the terms of reference.  This does not mean that we support the change in financial arrangements for donors that came into force this month.  I remain personally ashamed that a UK body could have made such a regressive decision based on no evidence whatsoever and against the wishes of the majority of respondents to the ‘consultation’.  It has done us no good whatsoever in the eyes of the rest of the world and is bringing forward potential donors whose eyes are only on the money.  These are not the right people to be ‘donating’ and if I am successful in my application I will do everything I can to make sure that clinics are selecting only those potential donors whose reasons for coming forward are not financially led.  Donor conceived adults, who are not comfortable with the practice, may have to compromise more than this if they wish to find a voice on this group.

http://www.telegraph.co.uk/health/healthnews/9185916/Sperm-and-egg-donation-should-be-like-giving-blood.html

Ipseity and donor conception…what does it mean for you?

I’ve been introduced to a new word recently…ipseity.  It means ‘essence’ or ‘self’…who I feel I am inside myself.  This feels to me to be an advance on the term ‘identity’ which is better used to distinguish one person from another and has associations with being asked to ‘produce evidence of identity’, like a passport or birth certificate, in official situations.

What is my ipseity I ask myself? Who I am seems so strongly connected to the relationships I have, the roles I perform and the life experiences I have had it is difficult to identify very much that is essentially me beyond these things.  Does my genetic background make any difference? Well,  I am the daughter of an English woman and an Italian man but brought up in the UK not speaking Italian and didn’t go to Italy until I was 17.  I am proud that my father was Italian – he seemed different to lots of other dads – but have no idea if my acknowledgement of being ‘half-Italian’ is based on  genes, environment or upbringing.  I know where I am from and that does feel important to me but it doesn’t feel as if it has anything to do with who I am.

And this is what sometimes troubles me when I hear or read about some donor conceived adults saying, “I don’t know who I am”.  Do genes really equal destiny?  I don’t think so and nor does the distinguished geneticist who spoke at our DCN national meeting recently.  But he was talking about science and DC adults are talking about feelings.  Are these competing discourses that can never meet?  Presumably DC adults are basing their feelings – or at least those feelings that are not to do with being deceived for many years – on what is known about genetic inheritance.  And, according to our expert, that doesn’t seem to be an awful lot.  With epigenetics now adding extra layers of complexity as scientists understand more about the impact parenting and the environment, in the womb and beyond, have on altering gene function.

It struck me when I read the Chairman’s Forward of the Law Reform Committee of Victoria’s report in to Access by Donor Conceived people to Information about Donors, how he referred to donor conceived adults being ‘denied information about their identity’, thus reinforcing the idea that somehow access to something beyond knowing where you came from was being withheld.

In an article in the Independent newspaper yesterday two donor conceived adults described their feelings on finding out in adulthood about their origins.  One is comfortable with the information but curious about her donor as she would like to know where she comes from.  The other is upset and angry and definitely feels that there is something missing in her life.  The first young woman was told by her mother when she was in her late twenties, the second found out through a third party and confronted her parents.  Did this make the difference between the way they feel about being donor conceived…one comfortable but curious, unworried about being told late, and the other furious about late telling and actively searching for her donor?  Wondering ‘where I am from’ and ‘who I am’ qualitatively feel like two different things to me.  I wonder what ‘ipseity’ means for each of them?

I am quite clear that I am much more than the sum of my genetic heritage, but how would I feel if I found out now that my male progenitor was not the man who raised me?  Pretty upset at being deceived, sad that my parents had felt they could not be honest with me and sad that my ‘half-Italian’ status might be questioned by some people, although the cultural and environmental connection would remain. Would I doubt who I am.  Unlikely.

There is no question that some DC adults genuinely feel bereft, abandoned, disconnected and angry.  How could anyone with heart try to deny them these feelings.  And I do absolutely support access to donor information.  But, apart from the deception if they were told late,  I still don’t understand exactly what these strong feelings are based on.  It doesn’t seem to be the science.  My own position is with the wise words of psychotherapist Adam Phillips in his book Darwin’s Worms, “The past influences everything but dictates nothing”.

Link to the article in the Independent -

http://www.independent.co.uk/life-style/health-and-families/health-news/so-whos-the-daddy-ethics-dilemma-over-sperm-donor-boom-7606835.html?origin=internalSearch