Welcome to my blog!

Welcome to Olivia’s View.

Olivias photo

This blog is my own personal view of donor conception:  the issues, the questions, my reflections on family life, plus comments on media coverage and events: I’m one of the co-founders of DC Network and mother to two sons and a daughter, now adults, conceived both with and without donor help. The views expressed here  are not necessarily those of DC Network.

Meet my family:  Husband Walter, he’s Chair of DC Network and used to be on the board of the HFEA;   eldest son Peter from my first marriage, married to Emily and parents to our lovely grand-daughter, younger son Will, now engaged to be married, and daughter ‘Zannah married to Jake from New York.  Then there’s Milo, a seriously noisy and annoying but ultimately lovable Siamese cat

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Come on Archers, when is Henry going to be ‘told’

Once again The Archers (sorry overseas readers, see explanation below) is tackling the topic of miscarriage.  In 2014 it was Ruth Archer with a baby conceived at age 46.  This time it is Kirsty, left-at-the-altar but nevertheless pregnant by ex-fiance Tom, who loses her baby in the second trimester.  The storyline beautifully follows the heartbreak and devastation of both Kirsty and Tom and how the ripples of sadness are felt by both families.  Miscarriage is an event that is often brushed aside with an assumption that there is little to grieve for as the child had not yet had a life to mourn, but as Kirsty and Tom’s reactions show, the loss of hopes and dreams, of ‘what might have been’ are very hard to deal with.   This baby had been very real and important for both of them, despite it having been unplanned, and particularly in their slightly unconventional circumstances, where there may not be a chance of another pregnancy.

So The Archers is handling this twist in it’s long running saga very well.  What we need now is the same sensitive attention paid to letting six year old Henry know that he is donor conceived.   It is another complex situation as Henry was conceived at a clinic by donor sperm when his mum Helen (Tom’s sister) was a solo mum.  She subsequently married the coercive and controlling Rob who when he finally departed for America (long, long, long story) told Henry that he was not his ‘real’ father.  For Henry, Rob was the only dad he had ever known, so he was very upset and has understandably been ‘acting-up’ as a result.   The question is, when is Henry going to be told the truth about his beginnings.

I have written to The Archers new editor Huw Kennair-Jones explaining how important it is that the script-writers and editors get this right as it will be setting the tone for every donor conception family in the UK where parents have yet to ‘tell’ their children (yes, The Archers is that influential).  I have explained about the importance of starting to tell when children are young and that it is entirely possible to do this in a way that is appropriate for their age.  I have of course told him about the resources that DC Network offer to support the telling.   Slightly to my surprise I had a swift response thanking me for my interest and for letting them know of the availability of support with this story-line.  All I can do now is wait and hope that the Archers team will take up the offer.  If anyone else feels like adding their voice to the call for Henry to be ‘told’, the email is  huw.kennairjones@bbc.co.uk or there are various Archers feedback and Facebook pages etc.

Watch this space or tune in…

For overseas readers: The Archers is a v e r y long running radio soap opera ostensibly about farming families that takes place at 7pm for a quarter of an hour six nights a week. EVERYONE in the UK knows about The Archers, even if they don’t listen to it, or won’t own up to listening to it.

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What parents of un-told DC adults need to know

I have just finished the first draft of a mostly re-written updating of the booklet Telling and Talking 17+.  This is intended for parents of donor conceived adults to support and help them tell their ‘children’ in the best way possible.  As I wrote the original eleven years ago it is not surprising that a lot needed changing – in particular the section on Searching for Genetic Connections.

Getting the tone of the text right has been tricky.  It needs to be upbeat and positive enough to encourage parents to actually ‘tell’ but it also needs to let them know that their adult children may respond in a variety of ways, few of them easy to deal with.  There will definitely be shock but also sometimes disbelief or even an element of relief as things that have puzzled them over the years are suddenly explained.  As Simon said, “I felt a tidal wave of relief” on hearing that his dad was not his biological father.  He had always felt disconnected from his dad and his side of the family and this had been a source of discomfort to him as he couldn’t understand why.  Interestingly enough Simon was alone in the eight donor conceived adults I spoke to from five families where my husband and I had spent time helping them prepare to tell, who had any inkling that their dad was not genetically linked to them.  All the others were completely taken aback but when they had recovered from the initial shock they all had compassion for their parents; for what they had been through earlier in life and for the agony of keeping the secret for so long.  Fascinatingly, all, except for Simon, thought that they had been told at the right age (between 19 and 37).  Simon was 40 when he had the news.

I wrote in a post on 2nd December last year https://oliviasview.wordpress.com/2016/12/02/telling-late-about-donor-conception-not-so-bad-after-all/ about the conversations I had been having with these late-told adults so I will not repeat myself here, except to say that Ken Daniels from New Zealand has also been coming across a number of late-told adults who felt that their identity had not been threatened as a result of being ‘told’.  They too came from warm, loving and intact families similar to those whose preparation for telling Walter and I supported in the UK.  Ken’s research on this topic will be published later this year.

However, I was reminded on a Facebook group the other day, that there are DC adults from such loving homes who don’t feel as benignly about donor conception as those I spoke with.  They are often those who were ‘told’ early, seemed to feel comfortable and then, as adults, have changed their minds for a number of reasons.  Building into the booklet the variety of first responses and then those that may appear as the years pass, has been one of the challenges.  Another has been encouraging parents to continue the conversation.  They cannot get away with ‘telling’ and then think they have done their bit and don’t need to say any more.  Two adults, Gemma and Linda, are very clear that keeping the lines of communication open is very important.  Also the sharing of the information with ALL the family so that DC adults are able to be as open or private as they choose about their conception, without being constrained by one side of the family not knowing.   I have certainly let parents know that the vast majority of DC adults, early or late-told, have curiosity about their genetic roots and links and that they may well search.  If they feel that parents are likely to be hurt by this behaviour they will keep the activity secret.  As secrets in the family are the last thing that needs perpetuating, the message to parents is to let their children know that they understand their curiosity and will not take searching as a rejection of them.  Of course a DC person may feel that they want to search privately and that is their privilege as an adult, but there is a fine line between personal privacy and keeping searching secret out of fear or as a sort of punishment to parents.

The largest new section in the booklet is of course about the advent of DNA testing.  It is in fact this revolution that sparked the urgent re-writing of the booklet as copies of T & T 17+ have been selling in far larger numbers this last year than in the previous ten years.  We can only assume this is in response to anxieties from parents about DNA testing.

There is no point in frightening parents of the possible consequences of ‘telling’.  What we all want is for them to do it.  But they need to deal with their fears and demons first and this means possibly re-visiting painful feelings and working through them to a point where they can put the needs of their adult children first, listening and responding in ways that that are not defensive or overly emotional.  That means preparation.

Philippa’s angst about holding the secret of her daughter Lucy’s conception for 37 years was palpable when I spoke to her on the phone. She found the enormity of what she had to say to Lucy unbearably painful.  This is part of what she wrote to me afterwards –

‘Thanks entirely to your wonderful support and preparation – the preparation was crucial – I was able to be very steady and positive, having rehearsed what I was going to say out loud in the car, and memorised the seven points I wanted to make.”

The new Telling and Talking 17+ booklet should be available from DC Network by April.

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Genetics as we live them

It is a reflection of how full life is at the moment that I have not blogged since the beginning of the month and that it has taken me until Thursday to draw to your attention to the thought provoking article by Alice Jolly on the front page of last Saturday’s family section of the Guardian https://www.theguardian.com/lifeandstyle/2017/jan/21/donor-siblings-do-ties-of-blood-matter

Alice, a DC Network member, has a daughter Hope, by egg donation and surrogacy.  She is a writer and in some ways the article could be seen as publicity for her book Dead Babies and Seaside Towns, but in fact it is much, much more than that.  Alice was prompted into thinking about what genetic connections in families meant to her and might mean to her daughter, by a comment from a friend who also has a child by egg donation.  The friend had met with the mother of a *dibling of her daughter and this meeting had been a success, so she asked Alice if she intended to seek out diblings for Hope as well.  Alice and her husband feel more cautious about making these connections but the question set off a train of thought in Alice’s head.  When their surrogate was pregnant with Hope, Alice thought about and researched genetic connections.  It wasn’t the science that interested her but, as she puts it, “genetics as we live it.”  She went on to say, “What soon became clear is that genetics matter less than what we think about genetics.”  As a writer Alice immediately saw this as a narrative.  She is useless at maths because her mother is useless at maths, but, as Jolly goes on to say, in physical appearance and just about everything else she is completely different to her mother.  We use these comparisons as markers of familial connection but they might equally be the result of environmental influences or coincidence.  We give them the meaning that fits with the story we want to tell ourselves.

Alice is swift to say that just because lived genetics are nothing more than narrative does not mean that they are of no importance and goes on to quote an adopted friend who spent years in therapy as a result of feeling she was missing the first pages of her life.  Alice and her husband have made sure that Hope will be able to know both her egg donor and surrogate mother in the future if this proves important to her, but it may also be that she is like a like a second adopted person quoted who, when offered his adoption papers by his mother, chucked them on the fire saying he really didn’t want to know.

Jolly herself has always felt like a cuckoo in the nest in her family but had her sense of displacement put to rest by discovering, in a big house move from urban Brussels to rural Gloucestershire, that she could be whoever she wanted to be and this was very freeing.  She poses the question that the current obsession, as a nation and as individuals, with “who we really are” is something of a toxic dead-end.  As she says, we are never just one thing or another.  “The unpleasant fact is that obsession with identity is finally self-indulgent…..it is never a good idea to drive using only the rear-view mirror.”

“Focusing on identity can limit and constrain.  Who cares what we are?  Is is not more interesting to consider what we might become?”

I think she’s on to something.  Do read the full article.

*Diblings are genetic half-siblings raised in a different family or children in the family of the donor.

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Love and grief revisited

I have just been re-visiting some of the posts I wrote back in 2011 when I first started this blog.  This one from the 27th September struck a chord.  It was written following one of DC Network’s national meetings and I think contains a message that is as important today as it was then.  A subtle message for a post-truth era when who shouts the loudest seems to matter most.

One of the messages that came across strongly from speakers at the meeting was the normality of feelings about infertility, sadness at not being able to make a baby with a loved partner or with a partner at all, recurring from time to time. These are not feelings that it is helpful to assume can be ‘dealt with and put away’, but like any grief can return, sometimes with unexpected intensity, when a button is pushed or a trigger tweaked. Although nothing to do with donor conception I found myself in tears the other day talking about the way my dad and I shared a love of good food, particularly anything gamey. He died in 1979.

Parents can sometimes feel guilty at feeling sad that their donor conceived child is either not connected to them or does not have physical features of their chosen partner. Children sometimes feel sad that they are not connected ‘by blood’ to much loved parents and donor conceived adults can feel sad or angry that genetic links to their donor and half-siblings are not accessible to them. Mostly these are not feelings that are present everyday but can arise in quiet moments.

In a previous post on 2nd September called The Healing Power of Grief I wrote about the Dutch therapist who values the process of grief but instead of seeing ‘acceptance’ – usually given as the final stage – as an ending, sees it as a continuing attitude to life where a person accepts the reality of a situation and expects that from time to time these feelings will be stirred again. From such a place it is possible to explore all experiences and feelings with openness, curiosity and a sense of calm, rather than pushing feelings away as belonging to a painful past.

This feels to me to be a gentler and more realistic approach. No-one should beat themselves up for having these feelings from time to time, or feel depressed or angry that a loss has not been ‘dealt with’. Love, grief and longing are part of the richness of the human condition. I wouldn’t be without them.

 

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The awkward truth: Genetic connection is always preferred to donor conception

The HFEA’s recent decision to allow mitochondrial donation is to be welcomed.  At long last families affected by mitochondrial disease will be able to have a child whose life is highly unlikely to be shortened by this devastating disease.   But this decision does highlight, once again, the premium put (by individuals, by society) on having a child genetically related to both parents.  An alternative, long available to couples at risk of having a child with a mitochondrial disorder, is egg donation, a technique used by many, many people around the world to circumvent female infertility but always resulting in a child not genetically related to the mother.  Women carrying mitochondrial disease are not infertile.  The argument goes that they should have the opportunity to have a genetically connected child ‘like anyone else’…except that, as we know, thousands of us every year don’t have that choice.

The awkward truth is that every heterosexual couple with children conceived by egg, sperm or embryo donation would have preferred to have the genetic child of their chosen partner.  We use donor conception because that is not possible.  If we have faced and mourned this loss and moved to a place where we feel we have something to offer as a parent more than needing a child ‘just like us’then it is likely that once the children arrive it will be difficult to imagine having any other child.  For others, in the past and sometimes still, lost fertility, hopes and dreams mean that a donor conceived child is a painful reminder of what could not be.   In the former families, honesty is likely to prevail.  In the latter the secret of donor conception is likely to be kept with corrosive results.

Honesty in donor conception families, however, needs to go beyond straightforward openness about the means of conception.   We need first of all to own up to ourselves that genetic connection is what we would have preferred – although we love our DC children to bits – and to admit that genetics might just be important for them too.  Positively choosing an identifiable donor is an integral part of owning our own preference for genetic connection and honouring our children’s right to know their own genetic background at the same time.  Many parents hope that openness with their children from the beginning will mean that they will not be curious and want to seek out their donor at 18.   But if we as parents can only recall our own sadness at finding that donor conception was going to be the only way we could have a family it should be easier to recognise that curiosity and a need for knowledge about genetic inheritance by our children is no different.  If accepted as just that it is highly unlikely to be a threat to family life…indeed it has possibilities for enhancement.  We owe it to our children to be honest with ourselves first.

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‘Telling’ late about donor conception not so bad after all?

I am currently working towards updating the DC Network publication, Telling and Talking 17+.  This is the only book in the series that focuses exclusively on first time telling of older teenagers and adults, the earlier ones including ‘continuing to tell’ as well as guidance around telling for the first time.  In the ten years since I wrote the original edition, some things, like the potential for finding genetic relatives through DNA testing, have changed enormously, whilst others have stayed the same.

Received wisdom has it that divulging the information about beginnings by donor conception to an adult is likely to result not only in shock but psychological damage as the person discovers that everything they assumed they knew about their connection to one side of their family , is found to be false.  A few voices denying that they have felt traumatised have come through, but mostly, like the myth that the ending of anonymity for donors must mean that it is virtually impossible to recruit donors, the media and indeed many in the donor conception community, continue to assume and believe that late ‘telling’ is inevitably damaging.

For some years now my husband Walter and I have worked with parents of DC adults who have changed their view over the years and come to the point of wanting, or needing because of circumstances, to tell their offspring about their beginnings.  As part of my preparation for updating the T & T book I have reconnected with some of these families and talked with both the parents and their adult children.  Some were told as long as five or six years ago and one had the circumstances of her conception revealed to her in June of this year.  Their ages on being told ranged from nineteen to thirty-seven years.

We are only talking small numbers here, five women and one man so far, so I am not claiming this as statistically significant research of any sort, but I have yet to come across someone who feels that the information about being donor conceived has affected their life adversely.  All were initially shocked and disbelieving – can this really be true – but instead of anger and distress at having had a secret kept from them for such a long time, the overwhelming emotion was for their parents and what they had suffered over the years, first with infertility and then holding the secret.  For those DC adults who had known the truth the longest, this feeling had persisted to the present.  None of them could imagine what it would have been like to have been given the information when they were children, some feeling that they may have used it against their parents as teenagers, and all believing that the age they had been told at (whatever that was) was the perfect time.  Some, particularly the woman who was told six months ago, recognise that they are protecting their parents but feel that this is something they want to do, family togetherness and solidarity being very important for them.  They do not feel they are denying their own feelings or impulse to search by doing this.  In fact the only person I interviewed who said she would definitely look for genetic relatives when her very elderly and frail father dies, is an only child and she is fascinated with the idea of half-siblings.  She was relieved to find she had not inherited the illnesses that run in her father’s family and saw the prospect of finding people she was related to as the opening up of an exciting new landscape, but the revelation of DC had not changed her feelings about her parents in any way.

We know from the many accounts on the internet and in the small amount of research on DC adults that the responses I have described above are not shared by all.  For some, the news turns their lives completely upside down and becomes a dominant feature rather than something that it is possible to integrate into the life they are leading.  Very tentatively, I wonder if at least some of the explanation for the difference  lies in the fact that all the DC adults I spoke to were raised in warm, loving, secure and intact families.  In particular, the dads (the non-genetic parent) were loving, affectionate and involved in their children’s lives.  Another difference to many other parents is the fact that they sought help and support in preparing to tell their children and wanted to do it in the best possible way, recognising that holding the secret was no longer the best advice (as had been told them by their clinic).  One of the parents was stimulated into ‘telling’ by the threat that her daughter was being encouraged to take a DNA test by a relative (as it happens a genetically connected one) for genealogical purposes.  She is SO relieved she was able to find support before taking the plunge.

The youngest of the offspring I talked to was nineteen when she was told.  She had just returned from a gap year abroad and was preparing to go off to university in the autumn. Her life felt in a good place but she believes that any earlier in her teenage years would not have been the right time to be told.  The others all felt that having established identities through relationships, their education and work, finding out about being donor conceived was something that took it’s place proportionately in their lives, along with many other things.

As I said at the beginning, I am not claiming the conversations I have had as ‘research’ but I do think that the role of preparation for parents of ‘untold’ DC adults has not been acknowledged before and maybe a significant factor in alleviating long-term distress and damage for the whole family.

One of the conclusions that some might want to draw from the above is that it’s fine to ‘tell’ late.  I don’t think so.  The anxiety that all of the mothers and some of the fathers suffered over the years and the energy that was taken up in the family by doing this, took it’s toll.  And of course no-one can know how their ‘child’ is going to respond.  Having a warm and loving upbringing is as protective in DC families as it is in any other, but we know from accounts of some DC adults that unresolved feelings about infertility and other stresses in families, like holding a secret, sometimes drives parents apart and that can only lead to complicated feelings all round.  Early ‘telling’ is undoubtedly the right and respectful thing to do, but it might just be that if the story is not started before the age of puberty, then waiting until full adulthood – unless there are pressing reasons to do otherwise – may bring about better outcomes.

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When looking Spanish means not fitting in with the family

It happened again the other day.  Talking to a woman who is building up to ‘telling’ her six year old daughter she is donor conceived, this very caring mum said, “I was so naive when we went to Spain for egg donation.  They told me that the baby would probably look like the father and as that is what I wanted to believe, I went along with it, blindly not questioning what was obviously a ridiculous statement.  I wish I had understood earlier what all this might mean for my child.”    ‘All this’ is that the little girl concerned looks Spanish, very unlike her fair haired parents and older sister.  The family lives in a rural part of the UK where her olive skinned good looks are rare, and she is constantly being asked about where she comes from.  Worse still, she has twice said to her mum, “I don’t feel I fit in this family.”  Heartbreaking.  Hopefully once she is told about her origins at least there will be an explanation that makes sense but she is still going to have to manage the random and uncalled for remarks from others.

Marion, as I will call her, is a very loving mother and desperate to support her daughter in regaining a sense of security in her family.  She is also keen to help her develop a sense of pride in her half-Spanish genetic identity.  This family’s story is not an unusual one.  They had one child easily and then on trying for a second had a long period of infertility followed by several late miscarriages. Egg donation became the only option and Marion researched treatments on the internet, somehow just assuming that eggs would not be available in the UK.  She chose a clinic in Spain where she was not offered counselling, and did not seek it in the UK, assuming that this was not necessary.  After all they just wanted a baby.  The couple were overjoyed when a pregnancy resulted from the first cycle of treatment.  When their daughter was born they fell in love with her immediately but soon realised, when people started asking, that she looked very different to them.

Marion and her husband are by no means the first to worry about the choice they made in going to Spain (or anywhere where donors are anonymous and there is little information). For some it is the question of looks not fitting in, for others it is the lack of information and/or the anonymity of the donor.  Another woman I am in touch with at the moment is pregnant with a child from egg donation treatment in Spain.  She was told the age and blood group of the donor but the clinic says that they are not allowed by law to give any further information at this stage.  For this woman it is the nationality of the donor that is important but the clinic have twice told her that they consider this to be identifying information and will not be included in the physical description she will get when the child is born.

Spanish clinics are actually allowed to give all non-identifying information to recipients – and I would argue this includes nationality – but most choose not to do so.  They choose instead to keep control over the whole process, selecting donors for recipients without giving them a choice and giving as little information as they can get away with.  Of course recipients by and large collude in this by not asking questions and simply being grateful they are being given the chance to have a baby at all.  British clinics also collude in the system by sending UK patients to Spain and elsewhere without explaining the differences between treatment there and in the UK.  Of course would-be parents should be asking more pointed questions and demanding information but I know, as a long time ex-fertility patient, that when you want a baby tunnel vision takes over and it is very hard to take the long view when the short term goal of being pregnant is so pressing.  This understandable short-sightedness makes fertility patients vulnerable to not putting the interests of their child first…something they only wake up to later when they realise how very different the rights of their children are to those conceived in the UK at the same time.

There are several points (and probably many more) that can be drawn from the stories above.  I believe that we need European legislation – or at a minimum guidance from the European Society for Human Reproduction and Embryology – about the amount of information that should be given to recipients about donors, and this should include nationality.  Implications counselling in a recipients own language should be mandatory so that they at the very least understand what they are taking on.  This should cover, amongst many other things, the fact that a child might look very different to the rest of the family.  British clinics should not be allowed to send patients abroad without explaining the differences in legislation in other countries and the implications of this for the child.  They should also have to tell people that egg donation is available in the UK with short waiting  lists, even if it is not at their clinic.  Some people believe that because their British clinic sent them abroad and their child will be born in the UK, that the child and donor will be on the HFEA register.  This is not true.

Going abroad to conceive a child is not a problem in itself.  What is a problem is that so many people do so without the proper information and understanding the implications.

I have not attempted to recommend the ending of donor anonymity in other countries because contacts have told me that this is so highly unlikely in the near future that even approaching the subject would be to undermine attempts to get other reforms.  This goes against the grain as it is something I believe in strongly, but I suspect it will take the future rising up of many donor conceived people claiming their human rights, to force conservative countries and the  massed ranks of the fertility industry to move to identifiable donation.  But if it can be done in Victoria, Australia, why not Europe too.  Sadly I don’t think I will live long enough to see that day.

DC Network produces a document that should be essential reading for anyone considering going abroad for egg, sperm or embryo donation.  http://www.dcnetwork.org/home-or-overseas

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