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 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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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 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 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.

 

 

 

 

 

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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.

 

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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……

 

 

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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

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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

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Genetic genealogy and the potential to explode donor anonymity

It’s probably the world that I move in but DNA testing for health, genealogical or just curiosity reasons suddenly seems to have exploded into general consciousness.  The other day the Daily Mail (not my favourite paper) had an article that recycled information from an academic paper that recently warned that egg and sperm donors could no longer ever be considered anonymous because of the potential for finding genetic relatives by way of increasingly low-cost DNA testing.  Debbie Kennett, one of the authors of this paper spoke at the DC Network conference in April, demonstrating the capacities of the three main companies offering DNA testing by showing results of tests carried out on herself and other family members.   Tracking down genetic relatives can be straightforward if the person you are looking for or someone in their immediate family has tested and therefore appears on the data base.  So far, this happens rarely in the UK as the data bases covering this country are pretty small (but growing).  Most often you will find that there is a 3rd to 5th cousin match and it takes contact with that person (if they have agreed to share their contact information), a look at their family tree and potentially some family documentation (so it needs their co-operation) in order to find the person being searched for.  I know a DC adult who managed to find someone who confirmed he was the first cousin of the man likely to have been her donor.   Unfortunately the story stops there as the donor, on being contacted by his cousin, said he did not wish contact to be made with the searcher.  Very frustrating.

All this has now become personal for me.  First of all our daughter Zannah decided to test with 23andme.  This is the company that has the biggest UK data base.  It also gives health reports, something not available via Family Tree DNA and AncestryDNA.  Zan is curious about her donor and half-siblings but she particularly wanted to know if she had any health risks not shared with me and also to try and establish her donor’s geographical ancestral roots.  This was really only possible to do if I tested as well so I decided to do so.  There is a tool on 23andMe that allows separation of maternal and paternal DNA inheritance, but you need at least one parent to test as well in order to get any sort of accuracy.  The results have been a mixture of absolutely fascinating and inconclusive.  We have discovered that we have the same blood group but different rhesus factors and share a trait that may make us predisposed to developing blood clots.  Zan has no other risk factors.  Although our results clearly showed and named us as mother and daughter, beyond that neither Zan nor I have a closer genetic match than 3rd to 5th cousin and so far Zannah doesn’t seem minded to follow this up with further research.  Someone who did follow up with considerable zeal is Elizabeth Howard, the first person in the UK to go public about having found her donor via a DNA testing service.  On Father’s Day this year she published a shortened version of her story http://www.conservativewoman.co.uk/elizabeth-howard-a-daughters-detective-story-for-fathers-day/      Her donor, like the the person referred to earlier, does not want contact but Elizabeth does know exactly who he is and what he looks like, and apparently the family resemblances are remarkable.

It would seem important, given the above, that all parents and potential parents of donor conceived children should understand about the possibilities of connections with genetic relatives via DNA testing.  However, once again the forum Fertility Friends have put their heads in the sand, first of all taking down a post from someone (not connected to DC Network) who gave information about this development and then, when the same person put a link to the Daily Mail article, management posted a dire warning about people getting into polarised discussions about it.  Hence, virtually no-one has said anything at all, but the link does remain so at least it is there for the curious to read.

I am sure Debbie and her colleagues are right in saying that anonymity for donors can no longer be guaranteed, but it is difficult to know how fast genetic linking via DNA will take off in the UK.  It is also likely to take longer where overseas donors are concerned, although the data bases for Scandinavia are large.   I paid only £67 for my test and this seems to me to be within the reach of large numbers so cost is unlikely to put people off.  It is a question of the awareness of the possibility becoming widely known and then people deciding if it is something they really want to do…and that is a big question.  Like the locked information on 23andMe about specific predisposing genes for Alzheimer’s Disease, Parkinson’s Disease and the BRACA genes, you cannot unknow something once you know it, so it is important to be prepared for finding out information that may not be comfortable…but on the other hand it could bring comfort and peace of mind as well.  As with most interesting and worthwhile things in life, it’s complicated.  I’m certainly glad I took the leap.

http://www.dailymail.co.uk/health/article-3648672/DNA-tests-expose-parents-staying-mum-donor-babies-Doctors-say-rise-relative-finder-kits-lift-lid-children-conceived.html

http://humrep.oxfordjournals.org/content/31/6/1135.abstract

 

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As our children grow up, we need to listen…

Since I returned from holidays in Vienna and Northern Spain (yes, I know, lucky me) I have been editing the presentations that were given at the DC Network conference in April, so that they can be printed in the Summer Journal.  The two talks in the morning were on genetics and  the role of DNA in donor conception and the huge recent growth of genetic genealogy, where DNA testing is used together with written records to discover information about genetic relatives.  I’m going to write about this another time but today I want to concentrate on something that came up in the afternoon.

Lucia, a solo mum with twins conceived by embryo donation in Spain was interviewed by the Director of DC Network.  Her girl/boy twins are now 9 and a half and since he was about 8 the boy has been keen to tell anyone who will listen that his mum used donors to have him and his sister.  Recently, to Lucia’s distress, he has been asking her if she is his ‘real mum’.  This was Lucia’s worst fear (and seems to feature on many DC parents nightmare list) but after reassuring him several times that she was his ‘real mum’, she stood back and realised that what she was not acknowledging was that the penny had dropped for her son.  Having thought anew about the much repeated mantra, “mummy needed an egg from another lady and a seed from a man to make you”, he had realised that if the ingredients that made him did not come from his mum, perhaps that meant that she was not his ‘real mother’.  What he was looking for was validation of this realisation and when Lucia gave it to him he was obviously relieved and very happy to agree that in every other way she was his real mother.  Lucia could have become upset and denied the reality or pushed her son’s questioning away, giving him the strong message that he was asking about something that was too difficult or painful for his mother to contemplate.  We know from the accounts of some DC adults that they have felt their parents were too vulnerable or fragile on the subject of donor conception for them to express curiosity or talk about their genetic relatives.  But Lucia did not fall apart, despite her own feelings she listened to what her son was asking and eventually was able to give him the validation he needed.  This family often have conversations about what the children might have inherited from their donors.  Both are proud of having olive skin and sometimes tell people about their Spanish connection.  Although she doesn’t always find it easy, Lucia prides herself on her open relationship with her children and wants them to be able to tell her how they are feeling without worrying about her.

Lucia is a solo mum but this situation could easily have occurred in a lesbian or heterosexual couple family.  All DC children will have at least one non-genetically linked parent and we know from about the age of eight a leap in brain development makes it very likely that the realisation of the lack of genetic connection will dawn on them around this time.  Some are sad that they do not have this link by blood to a much loved parent.  Some are just matter of fact about it.  All need to have parents who feel comfortable and confident enough in their role to be able to listen and acknowledge feelings.

Another topic that comes up in Lucia’s household is that of daddies.  Both her children say they would like one – and Lucia sometimes feels guilty that she went ahead and had them on her own (although she dearly would have loved a partner) – but she does wonder sometimes if the twins are simply wanting something that other children seem to have rather than actually missing out on a father in their life.

Lorraine, an American solo mum by DC who contributes to a couple of Facebook groups I am part of posted something very interesting about dads and the importance of validating children’s feelings the other day.  With her permission I am reprinting it here –

I had an interesting conversation with my daughter this morning. A Father’s Day commercial was on encouraging people to do things for their dads. She said:
“But I don’t have a dad”
So I went through the list of people she does have in her life including sister, grandma, aunts, cousins, etc. I also reminded her that she has a donor. She responded in a “yeah and” assertive tone with “Yeah but I want a dad.”
Although I didn’t feel the least bit slighted by it, I learned important things. Having a huge family doesn’t take the place of having a dad. On a positive note, she’s not connecting her donor with the concept of a dad. She’s perhaps learning the important difference. My point in mentioning all of this is because I’ve always wanted to be a mother, not a father. Therefore, I’m not concerned about “not being enough” for her because I embrace what my role is, a mother. That means I am not and can never be a father to my kids and I’m ok with that.
I never want my girls to feel that they have to pretend not to care about not having a dad. I don’t want them to worry about hurting my feelings. What’s important to me is that they feel free to express how they feel no matter what and I, their mom, will validate their feelings. So with her assertive tone of voice and all, I’m glad she felt comfortable to say what’s on her mind. If she’s like this going on 7, I shudder to think how she would respond at 17.
I’m posting this not to offend anyone but with the hope that it might help an SMC worried about Father’s Day.

What Lorraine and Lucia seem to have in common is a willingness to own the consequences of the decisions they took right at the beginning and to really listen to what their children have to say.  It is important to them that their children are able to express themselves but they have enough self-confidence to manage the negative emotions that sometimes emerge.  I suspect Lorraine is a bit tougher and more cool with it all than Lucia, but anyone who can parent twins on their own certainly gets my respect!  I can’t help feeling that the children of both women will do enormously well.

DC Network members can read the whole of Lucia’s insightful and often humorous interview in the summer edition of the DCN Journal, out in July.

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