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.

 

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.

‘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.

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

What are birth certificates for?

The question in this title was at the heart of a debate that took place in London, care of Progress Educational Trust, on Monday this week.  The UK’s Law Commission is currently seeking contributions to it’s consultation on whether or not the system of birth registration should be reformed and PET put on this event, Birth Certificates and Assisted Reproduction: Setting the Record Straight at very short notice.  Given that, an amazing 200 people registered to attend.  It was also interesting to learn from civil servants present that the General Register Office, responsible for the registration of births, death and marriages, are seriously considering the digital upgrading of a system that dates from the 1950s and before.

Julie McCandless from the London School of Economics felt that reform should be wider than just taking into account assisted reproduction.  What about those parents in transition from one gender to another and the increasing incidence of co-parenting, where more than two parents are involved in the commitment to raise a child.  What is the purpose of birth registration she asked; for what reason is it necessary and for whose benefit do we need it?

Natalie Gamble, solicitor and lesbian mum to two donor conceived children seemed clear that a birth certificate was a piece of paper that documented legal parentage of a child.  An adoption certificate showed that legal parentage had been transferred from one (set of) parents to another.  She argued, that the ‘natural’ parents, who were not necessarily the biological parents, but those who arranged and intended to become parents, should appear on the certificate, gamete donors not being parents and therefore not having the right to appear.  A birth certificate, she went on to say, tells a child that they have a secure identity.  There should be space on the certificate to include same sex parents and co-parents, so that it is clear who has legal responsibility for a child.

Natalie then went on to explain her views on changes in the laws around surrogacy, which the Law Commission is also consulting on, but I will not expound these here.

Marilyn Crawshaw, social worker, academic and Chair of the British Association of Social Worker’s working group on assisted reproduction PROGAR, said that birth certificates had only recently shifted from being a record of biological to legal parentage.  She supported the United Nations Rights of the Child position to be able to know one’s heritage which she sees as compatible with being raised by legal parents who are not necessarily biologically related.  She proposed a form of birth certification for everyone that draws attention to the document being a record of legal parentage but referring those who are interested to seek further possible information about genetic progenitors.

Craig Reisser is a dad by surrogacy and egg donation and spoke from his personal rather than a professional perspective.  His definition of a parent is that of a caregiver who has rights and responsibilities in relation to his/her child.  He believes that the children have a right to know their full story and he and his partner have gone to great lengths to have an egg donor and surrogate who are both willing to be known to his children.  He does not believe that children’s rights trump those of the parent but that a balance must be struck.  He also does not believe that the birth certificate is the right place to record ‘other elements’ such as the fact of donor conception/surrogacy or the name of the donor.  He went on to say that the birth record was just that, a record of an event and a document that was proof of identity and nationality.  It is a matter of public record and available publicly (in the UK) for purposes of population numbers and research, but is also a private family matter.  It is up to parents to share the information about donor conception with their children.  Donors and surrogates do not intend to be parents and do not wish to appear on the birth certificate.

Kate Litvinczuk is a donor conceived adult who felt it was right that her raising parents should be the ones named on her birth certificate.  Her parents did not intend to ‘tell’ her at the beginning – having been advised by their clinic not to do so – but Kate recounted how when she was around three her parents recognised her as an independent person in her own right and felt they could not withhold the information. The whole family are very pleased that they did tell and in fact have been more open than many families, occasionally appearing in the media.  Although Kate has the right to put her name on the Donor Sibling Register to be in touch with half-sibs by mutual consent she does not feel the need to at the moment, although she recognises that this is different for other DC adults.

Stephen Snyder, a lawyer from Oregon Reproductive Medicine, seemed to be on the panel, partly as a sponsor of the event, but also to provide a a contrasting American perspective.  He is very much against family secrets but believes the primary purpose of the birth certificate is to establish legal parentage, although this could be more than two people and the bureaucracy  should allow for that.  He explained the American federal system whereby each State has it’s own laws on donor assisted conception.  I think he said that he believes that anonymous donors remain in most places in the US because of inheritance laws that might allow offspring to claim on the estate of donors.  Perhaps some of my American readers could comment on that.

Each of the above speakers only had seven minutes in which to make their presentation and the rest of the time was spent in debate with questions and comments from the audience.

The whole issue of what happens to those children conceived abroad but born in the UK was raised several times and seen by some as a red herring and others as an enormous challenge to any change in the birth registration system that would enable enable donor conceived people to learn of their beginnings.   Any floor participant with a legal background was very clear that the BC is a legal document giving status, identity and nationality to the holder, but two donor conceived adults present were adamant that they had a right to be told early in life and to have information about their donor if they chose to have it.  Neither of them had been told until they were much older, they had suffered from this and they believed that marking the birth certificate in some way was the only way to persuade parents to tell.  Others felt that pressuring parents was not the right way to go and that there should be campaigns of awareness raising that would educate parents about the need to be open with their children.  Kate Linwinczuk felt that using a BC as a tool to give donor conceived people information (if their parents did not do this) was a rather inefficient way to go about it as people don’t usually see their own birth certificate until they are an adult and many people would not bother to follow up a bit of small print that suggested there may be further information available.  Others may be unduly worried by this.   A representative from the London Egg Bank said that undoubtedly a BC was a legal document but wondered if it had any other responsibilities.

An issue I felt was avoided was that of identity.  Several people mentioned the word but it was always in the context of legal identity.  Who we feel we are is of course quite different.  Personally I feel my own identity is made up of a complex multiplicity of factors…and they increase rather than decrease in shape and size as I get older.  Perhaps my genetic identity is part of that – Italian father etc. – but to me it feels like a pretty small component.  However, I know that for some donor conceived people – particularly those who were late-told and/or had childhoods marred by difficulties – feel very differently.  Their genetic make-up and links to others who share genes feels vital to their sense of self and their need to know their donor is great.  This was not explored and I wonder if it had been raised by the donor conceived people present it would have been possible for others present to take seriously…given the general leaning towards identity being seen only as a legal status.

A final topic that came up under several different guises was DNA testing; something that is pulling the carpet from under donor anonymity by providing the means for tracing genetic relatives mostly without their permission and revealing to some unsuspecting amateur genealogists that their genetic connections are not as expected.  Why use birth certificates to reveal donor conception when a DNA test will do the job for you?

No conclusions were drawn but I guess that’s what debates are about and PET should be congratulated for arranging the evening.  No doubt they will be writing up the event in the weekly on-line Bio-News.  Subscribe now for free to be kept up to date with news, research and events around assisted conception and genetics.

Update at 24.10.16   For an official version of the presentations and debates see Daniel Malynn’s account in BioNews this week http://www.bionews.org.uk/page.asp?obj_id=717831&PPID=717694&sid=321

29.10.16  Read also this excellent blog about the same event by Rebecca Steinfeld, The Politics of Birth Certificates http://www.rebeccasteinfeld.com/2016/10/the-politics-of-birth-certificates.html

Why donor conception parents need to be gardeners

Going back to my long standing interest in child and family development, I have just finished reading The Gardener and the Carpenter: What the new science of child development tells us about the relationships between parents and children.  The author Alison Gopnik, an American professor of psychology and affiliate professor of philosophy at UC Berkeley, posits that the active term ‘parenting’ leads people towards the Carpenter model of raising a child…sawing, chiselling, honing a child into a wished for shape or mould.  The Gardener model on the other hand tends and nurtures the soil in which the child grows into the person he or she wishes to be.  ‘Tiger’ parenting would be an extreme example of the Carpenter model and eco friendly home-schoolers right at the far end of the Gardener spectrum.  My own feeling is that you can use the term parenting to describe a middle-of-the-road version of the Gardener that both nurtures and guides, but I absolutely see where she is coming from. Modern life seems to promote a level of vigilance over our children that results in pushing ourselves and them towards standards of excellence that are unattainable for most people.  As a psychotherapist friend said to me this morning, “We need to fail our children sometimes so that they have something to kick against and launch themselves in life”.  If we do everything for them, then how do they define themselves and have incentives in the world.”

At the beginning of her Conclusion, Gopnik, who throughout the book refers to her own three children and grand-son, asks, “Why be a parent?  What makes caring for children worthwhile?  It certainly isn’t worthwhile because it is going to produce a particular kind of valuable adult.  Instead, as Gopnik says, “…being a parent allows a new kind of human being to come into the world, both literally and figuratively.  Each new child is entirely unprecedented and unique – the result of a new complicated combination of genes and experience, culture and luck.”  She goes on to say, “Part of the pathos, but also the moral depth of being a parent is that a good parent creates an adult who can make his own choices, even disastrous choices.  A secure, stable childhood allows children to explore, to try out new ways of living and being, to take risks.  And risks aren’t risks unless they can come out badly.  If there isn’t some chance that our children will fail as adults, then we haven’t succeeded as parents.”

I think the very wise words above are very hard for parents of the children conceived via assisted reproduction to hear.   Their children are so wanted that the idea of letting go and allowing some risk into their lives can feel very threatening, and where donated gametes are involved there is an extra element.  None of us can know how that mostly unknown donor factor affects our parenting or our relationships with our children.  Children who are not told about their beginnings are at risk of both finding out unexpectedly and of sensing that they are not being told something important that has to do with them.  This could be seen as one of the many risks of parenting, one of the decisions that parents make that children cannot be party to when they are young, but it is one that openness and honesty could avoid.  As Gopnik reminds us above, each child is unique and we cannot know how they are going to feel.   We are surely under some kind of moral imperative to reduce the very obvious risk of our children losing trust and feeling a sense of betrayal because they have been allowed to continue, sometimes into adulthood, to believe that they are genetically connected to both parents.

Parents sometimes hope for a mini-me…a child that will resemble them so closely that they are able to see all their own good points reflected back to them.  Children born with this burden placed upon them sometimes comply, living the life, attending the school and university that is designed to mould them into the adult their parent(s) needs them to be, but most end up rebelling sooner or later or suffering physical or mental breakdowns that reveal their need to be themselves.  People using donor assisted reproduction have a very good opportunity to let go of the mini-me fantasy and to accept that their child, like any other, will be their own person and are likely to bring elements that are unrecognisable to their raising family, because of their genetic connection to another family.  Personally I find this constantly fascinating and a bonus factor in family life (most of the time!)

As my friend, who is also a parent by donor conception, and I reflected this morning, being a parent is hard and sometimes very painful.  We do the best we can but we sometimes fail.  It is OK to fail.

The Gardener and the Carpenter: What the new science of child development tells us about the relationship between parents and children by Alison Gopnik and published by Bodley Head.

 

 

 

 

 

A word of caution about DNA testing

At the weekend I was drawn to a short item in The Observer magazine entitled Our Endlessly Fascinating Selves, under the weekly feature heading Inner Life.  It was about how our DNA makes each one of us, even identical twins, a unique individual and that the inheritance patterns of even something like eye colour, long thought to be pretty straightforward, are now being found to be much more complex.  Apparently it is effectively impossible to predict the colour of a child’s eyes, based on their parents’ eye colour and every combination is now possible, including blue-eyed parents making brown-eyed children.  The more that is known about the human genome, the more complex who we are (simply from a DNA perspective, let alone anything else) turns out to be.  This made me think about how the now widely available – and increasingly being taken up – option of DNA testing has the potential to lead people down a path of linear thinking that may not necessarily be helpful.

Most of us long for narrative simplicity in our lives; a simple line of cause and effect.  And in the words of the article,  this leads us to be “culturally programmed to misunderstand genetics.”  The truth is that human variation is infinite and just because we might discover that our DNA shows a pre-disposition to a particular disease process (increased risk of blood clotting in my case) it does not mean that I will develop this, because many other genes, plus my life-style and experiences will influence that tendency.  And, perhaps more controversially, just because we find a link to someone who shares some of our DNA, does not mean that we will be like them in any way.  Just as parents of donor conceived babies are always amazed by people who say how like the non-genetic parent they look, we often see what we want to see or assume must be there.  That old longing for simplicity.

Adam Rutherford, the author of the article is very sceptical of DNA testing, likening it at worst to a form of astrology, but he recognises the allure to test as part of our craving for simple answers to complex questions.  However, as he refers to family trees as being ‘elegantly easy to understand’ I suspect he has never considered donor conception or even, it would appear, bothered to take into account the people who have always appeared on family trees who do not share a blood line.

I absolutely do not regret taking a DNA test and totally understand why donor conceived people feel the need to do so, but I do think Rutherford has touched a raw spot about the very human wish for things to be straightforward. I enjoyed his description of the human genome as an “epic sprawling saga that culminates in you.”   An excellent reminder that life, at a cellular as well as a social level,  is nearly always much more complicated than we would like it to be.

A Brief History of Everyone Who Ever Lived by Adam Rutherford, published 8th September.

 

What we know and don’t know about donor conception

Although some parts of the donor conception world are moving at the speed of light, many things remain the same.  Choices for potential parents have become much more complex but the need to keep the well-being of the child at the heart of decisions made – YOU might feel more comfortable with an anonymous donor but how will your child feel about this – remains a fundamental challenge for everyone contemplating having a child with the help of a donor.  DC Network’s Preparation for DC Parenting workshops help couples and individuals face these very intimate and difficult questions in a safe and non-judgemental space.  The Telling and Talking workshops continue the theme into thinking about the principles and practice of ‘telling’ children.  Early in the creation of these workshops I wrote down what I thought we already know about how parents can best convey the information in a way that supports their child through the different stages of their development and understanding what DC means for them.  There are also many things we still don’t know and I’m sure there are many more points that could be added to this.  Anyway,  I came across the list just now and thought it might be helpful to share.  I’ve updated it a bit but it feels as relevant as when I wrote it ten years ago.  Some basic things just don’t change.

What we know and don’t know

What we know

• That parental comfort and confidence with decisions made is the most important factor in children’s acceptance of DC as just part of ‘their story’.
• That, as in adoption, the earlier children are ‘told’ the better (ie. start the process under the age of five)
• That, again as in adoption, DC people who are not told in childhood sometimes feel ‘different’ anyway, but having no explanation for this often blame themselves for relationships in the family that seem remote or for not being like anyone else in the family.

• As in adoption again, it seems that it is not the information itself that might cause upset or stress, but the way it is managed and how the story makes sense to a child. “Not what happens to you but the way it is made sense of.” Part of this is having feelings, whatever they are, acknowledged and responded to with empathy and kindness rather than denial and defensiveness.

• Telling our children early in their lives seems to have a protective effect on how they feel about DC and themselves but it will not prevent the possibility of a mixture of feelings – curiosity, sadness, possible confusion or anger as they grow and think for themselves. Parental understanding of this and willingness to manage it rather than shy away from these feelings is likely to be helpful.

What don’t we know?

• We don’t have a lot of information about how those told early and who have appeared to be comfortable with information, feel as they move into full adulthood and have children themselves. The majority of ‘searching’ in adoption takes place after age 25, with women being more curious generally and searching earlier than men.

• We don’t yet know how those children conceived abroad will feel, or those born since donor anonymity was removed in the UK.  We also have considerably less information about people conceived by egg or embryo donation and if there are significant differences between them and those conceived by sperm donation.  Although we may have some idea from the previous experiences of adopted people and sperm donor conceived adults, we don’t know exactly how their experiences will be the same or different or what support and services they may need.

And then there is sibling and donor tracing and DNA testing……

 

 

DNA testing is changing the world

It hasn’t hit the mainstream yet but I can tell you that the donor conception world is changing very fast…and it is the potential for finding genetic relatives through DNA testing that is driving the change.  DC Network is being approached for advice by families who have taken tests like 23andMe and then been contacted by a second cousin who could almost certainly name the donor: what now, they ask?   Parents of DC adults are realising that their ‘children’ could easily do a test and discover factors that would reveal that one of their parents could not possibly be genetically related to them.  Some parents are in very complicated personal situations where revelation of donor conception is likely to have far reaching consequences but they nevertheless believe that planned honesty is better than an accidental bomb exploding.   The DC adults who are most vociferously against donor conception have all had DNA tests done.  Some have found close genetic relatives and relationships are being established and/or struggled with.   The next group – those who are curious but not against the practice – are beginning to take tests.   There are already services – some free, some not, to help DC adults do the detective work that is often necessary in addition to DNA testing.  Our daughter is taking advantage of one of these.

Those DC people conceived after 2005 in the UK will have the right to have information about their donor from 2023 when the first of this cohort become 18, but in the intervening years there are many DC adults without this right and it cannot be long before it is almost standard practice to do a DNA test.  And then there are those who have been conceived abroad.  In the vast majority of cases their donor will have been anonymous but for how long, with data bases of DNA growing at such a fast rate.

The cat is out of the bag.  Donors are no longer anonymous.  Parents MUST tell and be ready to support their children.  There is no going back.

A good read for those wanting to understand about the etiquette of approaching donors or half-siblings is Finding Our Families by Wendy Kramer (of DSR fame) and Naomi Cahn.

Update at 29.8.16  Here’s an interesting read in G2 in The Guardian today, although the on-line article is much more in-depth and worthwhile.  It’s by someone who is both a neurologist and a journalist, with an interest in identity issues. https://www.theguardian.com/science/2016/aug/29/sperm-donor-deceivers-dream-turns-nightmare

When one letter of the alphabet can make so much difference

Recently I found myself at a presentation that included a fertility doctor at one of London’s leading hospitals.  He was speaking about egg donation and concluded his talk by saying that new research was beginning to show that women carrying a child conceived this way did pass a very small amount of DNA to the embryo at the very early stage of development.  He intended this information to be a comfort to women who felt they had had to give up all hope of a child inheriting anything from them and as a way to help them bond with their baby in utero.  Such very good motives…so sad that, according to the geneticists I have consulted, it was incorrect information.  So fascinating that a doctor…and I doubt he is the only one…usually so fixated on double-blind trials, gold standards and evidence based medicine…should choose to interpret findings this way from a scientific paper that came to no such conclusion.

In response to a question put at DCN’s conference about DNA being passed from mother to child, embryologist Victoria Ryder explained –

It’s not DNA.  It’s a very similar molecule called RNA which does not code … so it is very similar to DNA in that it contains bases, but it’s a messenger service basically. What they have found is that there are microRNAs in the womb, and that we think that they can get into the cells of the embryo, but they don’t insert themselves into the DNA or replace any of the DNA; they are part of the signalling that goes into turning the genes on and off, so we have not got any evidence at all so far to say that there is actual DNA that is coding for genes and proteins moving between the mother and child. And I think it is unlikely that we will see something like that in the future.

Victoria’s answer was probably informed by a definitive article written by geneticist  Dr Jess Buxton in Bio News back in November last year.  I’ll give the link to the whole thing at the end but Dr. Buxton wrote about how epigenetic (environmental) factors present in the womb prior to implantation may alter embryonic gene activity.  This does not mean that “Infertile Mums “pass on DNA,” as a misleading headline said at the time, but it does mean that women who conceive using donor eggs may affect the activity of their child’s genes from the earliest stages of pregnancy onwards.  Dr. Buxton went on to say,

“The research team, based in Spain and the USA, studied molecules called microRNAs.  As the name suggests microRNAs are short sections of RNA, a chemical relative of DNA.  Their job is to fine-tune the activity levels of genes during development and throughout life.  As such they are part of the epigenetic machinery.”   Dr. Buxton’s interpretation of the findings in the original paper (named at the end) have since been confirmed by another geneticist.

You may be thinking, why does it matter that a fertility doctor slightly misinterpreted the findings.  What’s one letter of the alphabet between patient and doctor?  Isn’t this just nit picking?

I had a long phone conversation with the doctor concerned a few days after his talk and he continued to insist that it was DNA, in very small quantities, that was passed from mother to child.  He emphasised that he always spoke about research being at an early stage and that only small amounts of DNA were absorbed by the early embryo. However,  I hope he understood my concerns that what he was saying could be heard in a very different way by a woman who is probably still going through a process of mourning for her own lost fertility and therefore vulnerable to clinging on to, and potentially exaggerating, anything that might lead her to believe that her genes will play a role in the make-up of her child-to-be.  At DC Network and on fertility forums we have come across several women who were clearly overjoyed by the misleading headlines.  I don’t worry too much about DC Network members who will have lots of opportunities to be challenged, gently, in their belief that their DNA is being passed, but I do worry about women who, often typified by someone who thinks of egg donation as ‘just a cell’, will use the headlines to deny their donor and use the information as, yet another, excuse not to ‘tell’ their child.

One of the main tasks of couples and individuals using donor conception is to adjust to the ‘difference’ of having a child this way. All counsellors understand the need for potential parents by donation to grieve for the child they cannot have before moving on to have the one that is possible. If women (and their partners) believe that their DNA is likely to reach the child, then the grieving process may be interrupted with severe consequences for the future family. This is why it is so important that the information given to egg donation recipients is absolutely accurate.  And why it is potentially so damaging that someone with the influence that fertility specialists have, should be mis-interpreting scientific findings in this way.

This is the original paper:  Vilella F, Moreno-Moya JM, Balaguer N, et al. Hsa-miR-30d, Secreted by the human Endometrium, Is Taken up by the Pre-Implantation Embryo and Might Modify Its Transcriptome. Development. 2015.

Jess Buxton’s article can be found here http://www.bionews.org.uk/page_581621.asp

An edited transcription of Victoria Ryder’s talk at the DCN conference in April 2016 can be found in DCN’s Summer Journal, being distributed to members now.

Update at 29.8.16  Here is a link to Professor Marcus Pembrey’s article in Bio-News, supporting Dr Jess Buxton’s explanation of the Spanish paper.  http://www.bionews.org.uk/page_686742.asp