Welcome to my blog!

Welcome to Olivia’s View.

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, who was the first Chair of DC Network, stepping down in April 2017. He also used to be on the board of the HFEA;   eldest son Peter from my first marriage, married to Emily and parents to our first lovely grand-daughter; younger son Will married to Rebecca in 2018 and now parents to two daughters and a son.  Our daughter ‘Zannah, a talented therapist and healer completes the trio. Together with her partner, she became a parent to a daughter in March 2022.

Old explanations that don’t wash any more

The most important work I do for DC Network these days is counselling/mentoring parents of untold DC adults towards sharing origins information with their ‘children’. Situations can be more or less complex – parents may still be together and on the same page with their wish to now reveal the secret they have been holding for so many years, or they may be separated/divorced and of completely different minds. Sometimes one parent has died, allowing the remaining partner freedom of action but also leaving them with the loneliness of ‘telling’ on their own. If the adult child is over eighteen and particularly if they are in their thirties or above, I usually hear a story that involves some variation of the parents being told by their doctor or clinic that there is no need to tell the child/information would only confuse the child/or even that treatment would be withheld if they indicated they were going to tell. As someone who completely ignored this advice I find it interesting that so many couples (and it is heterosexual couples I talk to) felt that they had to comply with this guidance, even against their better judgement in the case of many women. But mostly these same women felt they were protecting their partner from having to fully face the perceived stigma of infertility (counselling mostly not being available prior to donor conception) and in those days patients generally did what their doctor told them to. However, although it is true that telling later becomes harder and harder as time passes, I remain surprised by people who continue to live by, “Well, the doctor said no good would come of telling, so we didn’t.” A few couples, I discover when talking with them, never mentioned the use of a donor again following a successful pregnancy and have lied, sometimes without conscience but other times with fingers crossed behind their backs, when normal family discussions about likenesses have arisen. For these parents it is usually only the threat of DNA testing that has driven them to seek help in finally sharing the family secret.

One of the things that comes up in discussion with parents who are preparing to tell adult children is how to explain why this information has not been revealed before. I encourage them to speak about the culture and circumstances that prevailed at the time of their conception. This explanation seems to be readily understood by many DC adults and I have seen posts on Facebook groups that attest to this as well as hearing from some of the adults who have been ‘told’ by the parents I have counselled.

No such explanation is available to modern parents of donor conceived children. The Donor Conception Network (DCN) is celebrating Thirty Years of Openness this year. 2023 is also the year when the first eighteen year olds conceived following the end of anonymity in the UK in April 2005 will come of age and have the right to ask for identifiable information about their donor. It won’t happen until the end of the year but the years to follow may demonstrate a number of things. It is completely unknown how many new eighteen year olds will seek the name and last known address of the man or woman who donated sperm or eggs to their parent(s) so they could be created. DCN knows from conversations with teenagers and young people that asking for this information may not be top of their agenda at what is often a busy and exciting time of life. But these are of course people who have known about their origins from when they were very young. It is completely unknown how young people who have only recently learned about being donor conceived might feel. My guess is that they are likely to be more immediately curious than their ‘always known’ counterparts, but I could be wrong. And what about those who have yet to find out? The scale of openness is likely to have increased considerably since 2005 but by how much we can have no idea.

People who have had their family with the help of egg, sperm or embryo donation over the last ten years cannot have failed to notice that the default position in the UK was shifting and has now almost completely shifted to understanding that children have a right to know about (and ideally know) their genetic origins. Even if parents have gone abroad for treatment and by-passed the virtually mandatory counselling-before-donation undertaken in UK clinics, it would be unusual for the briefest of internet searches, undertaken by most would-be parents, not to have revealed that ‘telling’ is best for children. When has keeping big family secrets ever been a good idea?

I am already way past retirement age (whatever that is these days) so I am unlikely to be around when parents of todays untold children and young people are forced by circumstances, probably DNA testing, into sharing the family secret. But one thing they won’t be able to tell their children is that they didn’t know any better. It has never been more important for parents to be guided, supported, educated, cajoled…manhandled if necessary, into being open.

Time to think: the missing component when choosing donor conception

I was listening to BBC Radio 4 the other day while I was getting dressed in the morning. The programme was about hands and more specifically about hand transplants. It was a fascinating subject but I didn’t think that it would trigger me into thinking about the process by which people decide to have a child by donor conception. A woman who had had a hand transplant spoke very movingly about her experience of the rapid onset of sepsis that had culminated in the amputation of one (or possibly both) of her hands. On learning that she might be eligible for a hand transplant her first thought was that she would be happy to have any hands available and even that having men’s hands might be useful. But the surgeon at the hospital in Leeds where the surgery would be carried out, told her that his policy was to give patients a year in which to think about what a hand transplant might mean and to make the choice that was right for them. Although initially annoyed at being made to wait for life-changing surgery the woman was eventually pleased that she had been given an opportunity to really think about what she was doing, including the fact that someone was going to have to die in order for her to have hands again, and at the end of the year chose to have new hands that fitted with her body type. The key factor was time to think and reflect.

Hand transplant surgery and donor conception don’t seem to have much in common but the policy of time for thought is one that assisted conception medical professionals could and should take a lesson from. The very fact that donor assisted conception involves the making of a human life with gametes from a third person, should be cause for reflection in and of itself. Instead the very understandable tunnel vision of wanting a baby combines with the medical imperative to ‘fix’ the infertility of a patient, resulting in what can feel like an unstoppable momentum of baby-making treatments that don’t allow would-be parents time to think about the meaning of what they are doing…for themselves or their potential child.

As I have written before, donor conception is not for everyone. Those people who believe that genetics equal family, should not be going down this path. Those who long for an identikit version of themselves or their partner need time to stop and consider that their child (whether conceived through donated gametes or not I would argue) will be a person in their own right. Those who are anxious about difference need time to understand that this IS a different way of creating a family and those who are ashamed of their infertility and/or using donated gametes should not go ahead unless and until they have faced, with help, the origins of their shame. All need time, and sometimes support from others, to reflect on the life-time implications of having a child or children this way and to recognise that the decisions they take will have an impact on their child. Their responsibility is to share information with the child about how they were conceived and to support their curiosity and/or need to search for genetic relatives in the future.

Sadly, the medical profession are unlikely to change their ways any time soon. Money and fertility medicine are also a toxic mix that propels the rollercoaster. But potential parents do have the power and the ability to step back, take time off for contemplation of the future for themselves and any child conceived with the help of a donor and make better choices as a result. Your children will thank you for that.

Unchanged in 10 years: mixed feelings and complexity

I started this blog in June 2011, so ten years ago. Going through my posts with a view to seeing what had changed and what had stayed the same over that time it didn’t take me long to find a post that rings as true today as it did ten years ago. More than that it highlights the need to recognise complexity from the outset, echoing only too clearly the words on the cover of the the We Are Donor Conceived magazine that I wrote about in my most recent post. Has this happened? No it has not. Would-be parents are still ‘sold’ the myth of donor conception as being the uncomplicated answer to infertility when those of us who have been around for a while, both as parents and as donor conceived people, know that mixed feelings are normal and complexity needs to be understood from day one.

Nuffield Council on BioEthics and blue eyes…

Posted on June 15, 2011 by oliviasview

The Nuffield Council on BioEthics are having a close look at all human organ and gamete (eggs and sperm) donation and as part of this are running a twelve to fourteen month project considering the role of genetic, as opposed to social and legal, parentage in the context of families created through assisted reproduction and donor gametes.  Walter was invited to speak, as were other invited participants, at their scoping meeting on 9th June.   Walter has now shown me the report of this meeting and unlike many reports from get togethers of this sort, it is worth reading as it covers most of the really important questions that arise around the modern practice of creating families with the help of a donor.  It also highlights issues that are often glossed over, like the way medicalised or euphemistic terminology is often used with the aim of creating neutrality or avoiding senstivities, the lack of ‘evidence’ in many areas and whether weight should be placed on anecdotal accounts, as happened in the recent ruling on donor anonymity in British Columbia.  Another recommendation is that “Complexity should be highlighted, avoiding the danger that everything is seen as straightforward, with just occasional exceptions”.  Well said, that woman or man!

One point in particular struck me – “Individual stakeholders may also hold conflicting views: genetic information may be seen simultaneously both as important (this is information ‘about them’ which one should disclose to one’s children) and as not important (our family life is just as rich as in genetically related families).”

In my own family and in DC Network we are very familiar with these conflicting views or ‘mixed feelings’ as we often refer to them.  All of us who have confronted the need to use donor eggs, sperm or embryos know the push and pull of desperately wanting to create a family whilst at the same time having to manage the massive disappointment of not being able to have the child of a much loved partner…or for single women, not finding the right man to have a child with.   I recall the sadness, even though it is nearly thirty years ago, of knowing that I would never have a child with Walter’s lovely blue eyes, his temperament, intellect and kindness, and I can still be moved to tears by the sight of his ‘family’ nose that of course none of our children have.  Yet at the same time I feel the love of a tiger, and did from the start, for the children we could have and who wouldn’t be here if Walter had been fertile.

Over the years and talking to many, many couples and individuals it has become clear that it is those people who can manage to balance these mixed feelings who, on the whole, do best as donor conception families.  They are the people to whom ‘telling’ children feels natural and right and who have fewer fears about other people knowing.  I suppose it is not surprising that we have a lot of counsellors, psychotherapists and people in the liberal arts generally in the Network, although this is by no means everyone.  Those who have a tendency not to see things in shades of grey often struggle with the prospect of others knowing about their private lives and find it harder to ‘ride the balance’.  They may also understand on a thinking level why children ought to be told but find it emotionally difficult to carry through.  As infertility is present in all personality types, it is this latter group that DCN needs to target…but at the same time it is probably these people who instinctively avoid us!

It’s Complicated…

https://www.wearedonorconceived.com/magazine/

I love the front cover of the latest edition of the We Are Donor Conceived magazine/journal. It features a young woman with a full sleeve of colourful tattoos and next to her slightly turned head, the words, It’s Complicated. Nothing sums up the dilemmas of donor conception more than this phrase and this beautifully produced publication adds substance and detail to illustrate the range of ways in which donor conceived people are living with the complications of their beginnings. Here are people from all family types. The majority found out the truth about their origins as adults, mostly via DNA testing, but some were told early. Most were conceived by sperm donation. Many have now discovered the identity of their missing biological parent, and sometimes half-siblings too, and feel fulfilled and enriched as a result. All are angry at a fertility industry that continues to promote anonymous donation and – this is in America – fails to monitor and regulate the number of siblings each donor can contribute to bringing to life. Questions of identity are explored. How does it feel to discover that you have a large percentage of DNA from an ethnic group not shared by your raising family…or the other way round, to find your DNA contains no evidence of the ethnic/cultural or faith group you have been raised in? The sense of loss is palpable in many accounts; not only of identity but also of whole generations of genetic relatives they have been denied access to.

This journal is powerful reading but it contains little of the negativity aimed at parents that was present from some earlier contributors under the We Are Donor Conceived banner. Instead there is perhaps a rueful weariness about having to keep banging on about just how complicated donor conception is. As one young woman says, “While I can forgive the past, the fertility industry continues to be unregulated and the rights of donor conceived people are ignored. Having children via donor conception is a privilege, not a right. It’s not up to donor conceived people to figure out the ethical way to create people via third party reproduction…” She goes on to berate the unregulated American system, but those of us in the UK have little reason to be smug. In clinic treatments we do limit the number of half-siblings that can be conceived, but only those created in the UK. Many clinics use sperm imported from abroad and in addition to the ten families here, many, many more will be being made around the world. Worst of all, some UK clinics have started selling abroad the sperm from donors whose UK ‘quota’ has been fulfilled. Past and current users of these donors, and indeed the men themselves, do not appear to be being informed that this is happening so a parent could be feeling happy that they had done the right thing by staying in the UK for treatment, only to find, perhaps via DNA testing later, that their child has very many half-siblings overseas.

Having a child by donor conception IS complicated. This is something that DC Network tries to convey in the workshops the organisation runs for professionals who work in clinics and legal practices as well as in workshops for potential parents. Some professionals seem to have found the shelter of a ‘comfort zone’ masquerading as progressive practice, that goes something like, ‘as long as you ‘tell’ early and often then everything will be fine’, but it really isn’t like that. Just as love is not enough for good-enough child-raising, just ‘telling’ is not good-enough for donor conceived people. They need parents who understand that they may have complicated feelings about being conceived this way, they may have curiosity – great or small – about their genetic relatives and that if they wish to search for them it will mean additional family, not replacement family and that they really need their parents to support them in this quest. Potential parents need to know this from the beginning, but only DC Network and a very few others in the UK are trying to get them to understand the responsibilities that a parent by DC needs to be willing to take on. DCN brings these points to life with talks by donor conceived adults and parents who have faced their children’s questioning about their beginnings. Feedback from these workshops tells us that the message received is a powerful one but until an ‘It’s complicated’ culture is taken to the heart of the fertility industry, most potential parents are unlikely to fully realise what having a child by donor conception really entails.

In the meantime groups like We Are Donor Conceived MUST be listened to. But as lovely as this current publication is, it costs a ridiculous amount to import to the UK. Please WADC, can we have an on-line version too. UK and other people around the world need to read what you have to say.

If you would like to buy a hard copy of he mag you can do so here https://www.wearedonorconceived.com/magazine/. In addition or instead there is lots of excellent content, including personal stories, on the website wearedonorconceived.com

Too soon for completely open gamete donation?: how about contact by Letterbox in the meantime

I am delighted to introduce my first first guest blog writer.  Jane Ellis is a long-standing colleague and friend who also has two adult children by sperm donation. She is now retired from her career as a social worker, latterly in adoption and fostering, and as a counsellor for Relate. This piece is written entirely in a personal capacity.

“Olivia’s blog contemplating the possibility of open embryo, sperm and egg donation set off some connected trains of thought for me.

In the 1980s I was sent as a young social worker to tell the grandparents of a child we were about to place for adoption that they wouldn’t be able to see him again.  An adoption was not just a legal fresh start but an absolute cut-off from all birth family links.  Thank goodness adoption has moved on hugely, partly due to research giving voices to adopted adults and birth relatives, which gave those groups confidence to get together and speak for themselves.  I want to be absolutely clear that adoption and donor conception are very different processes; however, that’s not to say that one field has nothing to teach the other. For both, some time after a legislative framework has been put in place, those who have the least say in the process are finding their voices.  In our case the voices emerging are those of donor-conceived adults and – late to the party but really important – those of the donors.

The ‘Curious Connections’ research by the Morgan Centre at the University of Manchesterhas been presenting the views of all types of donors in the UK. (https://www.socialsciences.manchester.ac.uk/morgan-centre/research/research-themes/kinship-and-relatedness/being-an-egg-or-sperm-donor/).  The researchers describe their findings that donors saw their status as being ‘relational’ and ‘embedded’ in their lives.  In other words, the donors they talked to (irrespective of whether sperm, egg or embryo) didn’t just donate and forget all about it for 18 years or more.  The researchers found that most donors felt a definite connection with recipient parents from the beginning, a difficult emotion to pin down but suggested as ‘an affinity’, and they cared about the resulting children, although they didn’t see themselves as parents.    The research went on to suggest that from the donors’ perspective, the idea of donation is moving on from an altruistic act for someone you have had no say in choosing and will never know, towards donation as creating a ‘gift relationship’.

The researchers concluded their second webinar presenting their results by inviting us to consider a future option.  This is of donor-recipient communication through a structured third party, which could lead by mutual consent to direct contact with parents and, most importantly, their children.  

Adoption has been operating such a scheme, generally called Letterbox, for a long time.  It works.  It means that adopters keep in touch with other parents caring for their children’s siblings, and with birth relatives; as their children get older they can become more involved if appropriate, and start to form their own relationships.  It means that adopters and their children have a much better idea of the others’ lives and the complexities should their children want to meet their birth relatives.  Whilst no-one is any doubt that the children legally belong with their adoptive parents, it acknowledges that genetic connections are important for many people at some times in their lives. Letterbox helps to provide a foundation for adopted adults to take forward or not as they choose. It does, of course, call for skilful third party handling.  Similarly, as one participant on the Curious Connections research observed, donor-recipient relationships might be complex and intense and need careful management. It doesn’t always work – people’s circumstances and views change – but the resource is there as a matter of course.

Many donor conception parents wrestle with the idea of a donor as an ‘outsider’ becoming involved in their family.  Sometimes it makes their child all the more curious to find out who this mysterious person is.  Perhaps it stops parents even disclosing to their child that they are donor-conceived.

I think we ought to be able to do better by all parties involved.  Suppose parents begin to see their donor as an ally, one whose role might slide between minor to major at different times, depending on how the donor-conceived young person views it.  In playing a minor role, the communication would at the least provide a reality check; there is far less room for fantasies on both sides.  It validates a message that genetic connections can be important, and gives solid ground for a DC adult to decide for themselves whether and how to move this forward.  They will be better equipped, for example, if they have known for ages that their donor has their own family, and therefore there are half-siblings from him, her or them in the mix. 

This will only work if both sides are convinced it is good for the psychological and emotional health of the child in the centre.  It reminds identifiable donors of the contract they signed up to and it reminds parents of the existence of the donor as a real person.  Of course, some families with known donors are already finding their way together through all this.  It would be great to know more about their experiences.”

If anyone reading this would like to have a guest blog spot, get in touch.

If anything other than completely open embryo donation is wrong, can egg and sperm donation be far behind?

I belong to several Facebook groups where donor conceived people (DCP), potential or actual parents of DCP and donors offer their perspectives and experiences of donor conception. Recently Marna Gatlin, founder of Parents Via Egg Donation (PVED), wrote a long post on one group stating her beliefs around how embryo donation should be conducted in order to be ethical. She knew it would be controversial but felt that in the interests of children created this way it was necessary.

I have felt the same way as Marna for a long time – and I speak here as an individual and not as a spokesperson for DC Network. We both agree that embryo donation is only ethical if the donating and recipient couples agree to raise a child in full knowledge of their origins and deliberately set out to nurture a relationship between the families in full acknowledgement of the genetic connections between them. Anything else feels like a violation of the rights of all the children involved. There are places in the world where this happens. In New Zealand it is written in to the law and practice of assisted conception. In the USA there are agencies that bring together recipients and donors for this purpose, but some discriminate against those who do not fulfil their selective criteria. It is interesting that in the UK, domestic embryo donation is very rare. Clinics will say that this is because of the shortage of embryos for donation. But the reason for this lack of embryos is I believe at least partly due to the ending of anonymity for donors. The fact that the donors can become known when the child is 18 exposes the reality of what embryo donation means – full genetic siblings of same or similar age being raised in different families with only one of those sets of parents being fully genetically related to all the children. Most donors and recipients blanch at this prospect (which is usually revealed in counselling), but if the law allowed everyone to meet before the donation took place and make reciprocal arrangements in the interests of the children, then the potential for happy families and children could be realised. Sadly the unintentional result of donors becoming identifiable when a child is 18 and not before this time, is that those couples or individuals whose only chance of a family is via double or embryo donation, go abroad to countries where donors are fully anonymous and very little information is to be had.

The complete separation of the child from genetic relatives is at its most stark in embryo donation. To my mind, it is hard to know why or how anyone these days could contemplate such a method of family creation. But what about sperm or egg donation?In single donation parents have always comforted themselves with the knowledge that a child’s genetic make up will contain at least one known part and maybe it doesn’t matter that an unknown person makes up the other half of their child’s genetic heritage. For some, although fewer in these more enlightened times, the egg or sperm is ‘just a cell’ and nothing to do with another person with a history and family heritage of their own. The nature/nurture debate has swung different ways over the years and it has been relatively easy for parents to feel that early ‘telling’ and lots of love and security will be enough for their child. But, as I have written in previous recent blogs, it is becoming harder to ignore the spectrum of feelings, ranging from curiosity to terrible pain and distress, coming from donor conceived people; some told late but increasingly those who were early told but whose thoughts and feelings about their origins have changed over the years.

In the group in which I found Marna’s post, the consensus from donor conceived people is that known donation, where both biological parents are part of a child’s life from the beginning (alongside the parent(s) who are legally responsible and actively parenting a child) is the only ethical way to proceed with donor conception of any sort. Although there are many issues to address with known donation – not least the insecurities and fears of potential legal parents and the bases on which these relationships are made – my strong sense is that this is the future. DNA testing is certainly undermining both full anonymity and identifiable at 18 donorship, but there is a more important reason for moving to ‘known from the beginning’ third party parenting, and that is that everyone deserves the opportunity to have a relationship with all the people they are genetically related to. As children grow up they can decide for themselves how important genetic ties are to them. Relationships with the ‘extra parent’ or half-siblings may or may not survive – many families lose touch or have very loose relationships with members they have little in common with – but they may also become very meaningful and be valued highly. DCP are clear in their posts that raising parents, particularly if they are open and supportive, are their first attachment love and as such of vital emotional importance to their children. Other bio parents and half-siblings fill a different emotional space – often equally of value but different in type to the essential connectedness (no matter how toxic that connection sometimes is) of the first attachment parent(s).

I know from my own experience of parenting a DC daughter whose views have moved over the years that there is nothing to fear. We talk about her feelings and couldn’t be closer to her. She has our complete support in her search for genetic relatives and we are as delighted as she is that she has recently had confirmation, through DNA testing, that she does indeed have a strong link to the particular ethnic make-up that people were always assuming she had. But I say this as someone who is deeply involved in the DC world and probably most importantly as a parent of adults. I am no longer someone faced with the infertility of a partner and despairing at the prospect of never having a family. Very few people, and particularly couples, at this stage are likely to feel anything other than threatened by the idea of known ‘donation’. There is a huge amount of awareness raising and psycho-education that needs to happen before potential parents start to tell their clinic that only a known donor is acceptable. But it will only be when potential recipients of gametes from other people vote with their feet and their dollars/pounds sterling that clinics are likely to change their practices.

There is a lot of work to do. This change is unlikely to happen in my life-time but happen it must if we are to recognise and honour our children’s heritage and give it equal status to our own need to raise a family.

Marna Gatlin’s post is heartfelt and sets out clearly the many reasons why anything other than completely open and transparent embryo donation is unethical and also how the behaviour of some agencies in the US is equally unethical and sometimes discriminatory and exploitative as well. It is unlikely that the UK would allow similar behaviour from agencies or clinics as, unlike the US, we have a strong history of and belief in regulatory systems, but it could happen elsewhere. Changes to primary legislation would be needed in the UK for an open system of matching known donors to recipients to take the place of the current ‘identifiable at 18’ law. This change, legislated in 2004 and enacted in 2005 is I think still considered progressive, both in the UK and elsewhere and I suspect it will take a long time for this topic to return to Parliament, but return it must.

For those who have not seen it, I am reprinting Marna’s post below, having gained her permission to do so. Her arguments for ethical embryo donation are strong stuff, but I believe unchallengeable if a child-centred view is taken. Egg and sperm donation need also to be seen through this lens.

“Here’s my PSA (ed.public service announcement) for the day – I am sincerely not here to make friends and this post may upset intended/recipient parents – and that’s okay. I am however, here to hopefully aid, help, and give accurate resources, and support to intended/recipient parents who have children via third party reproduction with respect to egg donation/embryo donation.To begin with embryo donation is just that *embryo donation*. It is not adoption. It never has been adoption. It will never be adoption. Embryos have special significance compared with gametes because of their potential to become persons, but they should not be afforded the same status as persons. Adoption refers to a specific legal procedure that establishes or transfers parentage of existing children. Application of the term‘‘adoption’’to embryos is inaccurate, is misleading, and could place burdens upon recipients and should be avoided. (as per ASRM https://www.asrm.org/…/defining_embryo_donation…)·

Open embryo donation from my perspective should be the only way donating parents and intended/recipient parents participate in embryo donation. I feel strongly that it’s not okay, unhealthy, and horrible to separate siblings, especially when *YOU* know as a parent where they are in the world.· Donating embryos anonymously is mindfully discarding your child’s *potential* full sibling. It’s also mindfully denying that potential child of their biological/genetic connections and original parents, as well as denying that potential child the knowledge, access, and potential relationship with their full siblings.· Open embryo donation is about creating, building, and nurturing relationships between families. Both parties (Donating and Receiving) work together to create a safe, healthy, and open environment for their respective children to know about their donor conception origins/stories. Where their biology/genetics arrive from, who their siblings, and genetic family as well as the option for a relationship with that family if they should so choose as they grown up. That’s considered being good stewards in regards to family building and growing/adding to your family and parenting.· This process is child-led. This means we set and build the stage, environment, or foundation for the above. When these kids are ready to meet in person they will already know about one another. They will know about their origins. And we follow their lead, answering their questions, being transparent, and treating embryo donation and *THEM* with the integrity, love, and respect they deserve.

Not all embryo donation groups (regardless where) or organizations are created alike. Personally, I would not participate or be a part of an embryo donation group who ascribed to or practiced the in following practices:

Discriminates against people of color, sexual orientation, gender, and ethnicity, religious or non-religious or political affiliations.

Does not advocate a legal contract created by a licensed attorney specializing in third party reproduction between the donating family and the recipient family that spells out clearly the intent of both parties, what continued contact looks like, and what happens to left over embryos, which is super important. INTERNET CONTRACTS ARE NOT ALWAYS LEGAL. Groups that tell you it’s okay not to have a legal contract and a handshake is fine. It’s not.

Does not advocate both parties meeting with a licensed mental health professional who specialize in third party reproduction. (LIFE COACHES ARE NOT MENTAL HEALTH PROFESSIONALS) Groups that tell you the mental health piece is not important. It is. Groups that tell you they can provide their own mental health support within the group even if they are not mental health professionals. They can’t.

Groups or organizations that charge patients for embryos. Agency fee’s administrative fee’s are appropriate. Charging patients / clients for embryos is not. ***There should be no monies exchanged between donating parents and recipient parents for embryos.*** The only monies exchanged between donating and recipient parents is for reimbursements for things like – Legal contract, medical visits or testing, reimbursement for cryopreservation storage, visit with mental health professional.

Groups that do not advocate or support telling children of their donor conception origins. Groups that state telling a child their story is not important. Groups that say telling children about their origins is unhealthy and potentially harmful to the child.

Groups that do not allow YOU as the donating parent to choose who you donate your embryos to.Groups that do not allow YOU as the intended parent to freely communicate, or choose the donating family you might receive embryos from.

I am sure I have forgotten something, and you all will remind me. Open embryo donation is a passion of mine. We are talking about potential future children. We need to give them their best start REGARDLESS of how uncomfortable the donating parent or intended/recipient parents might be regarding being open, transparent, or continued contact.That’s why it is important we all approach and embrace open embryo donation the right way, thoughtfully, mindfully, legally, healthily, always placing the child first.”

That difficult word ‘donor’

In my blog of July 8th about the new Telling and Talking book, Continuing the Conversation I referred to introducing a new way (for parents) of thinking about the word ‘donor’.  So many of us think and use this term with reference to ‘our children’s donor’ when in fact the person providing their gametes was giving them to us, not our children.  Some fascinating research from the Morgan Centre at the University of Manchester* (in the UK) has very recently shown that both egg and sperm donors in the UK often feel an affinity with the recipients of their gametes.  They definitely do not think of themselves as parents.

As a taster of the new booklet, here is one of the sections on Terminology.  For some DC adults it may feel that I haven’t gone far enough but please remember that the people being addressed in this booklet are parents.  Some of them may not have come across these ideas before and a gentle introduction is likely to achieve more than language that feels judgemental of their choices.

Terminology

It is likely that you have always referred to the man or woman (or both) who contributed their eggs, sperm or embryos to help create your child as the ‘donor’.  As children reach adolescence they may start to try out different language.  Don’t panic… as in so many areas, young people are trying out different ideas and ways of being.   Teenagers, and indeed adults, can struggle with trying to find appropriate terms.  Some young people come up for a while with ‘real mum/dad’.  They might say of the donor: ‘Technically, that’s my dad.’  Or ask ‘Does this mean you’re not my real parent?’  Although many parents dread this question, in DCN’s experience it doesn’t get voiced as often as you might think.  Young people, no matter how they struggle with the language, are unlikely to see the issue as ‘real parent’ vs ‘not real parent’.  It helps a great deal to keep in mind that this question, however phrased, is not a personal attack, but part of your child’s attempt to make sense of the information they have about being donor conceived. Generally young people are not looking for an alternative parent. One response to the use of the word ‘real’ could be something like:

‘That’s an interesting word to use, how did you get to make that connection?’ The end result will be that the story gets re-shaped by the person who is ultimately going to own it.

You might be asked: ‘What made you pick this donor?’  Depending on your circumstances, you could talk about any personal statements or pen portraits, the fact that you trusted the doctor who made the match or personal characteristics of the donor.   If you have more detailed information about your donor than you have given your child so far, this might be the time to ask your child if they want to know more right now. Those with known donors (particularly from within the family or a close friend), often ensure that their child knows about them, even if they don’t understand the connection, from a young age.  If you are in a heterosexual couple and have a known sperm donor, it is important to ensure your child is clear that their mum did not have sex with this person. It might also help to ensure that conversations about characteristics of the donor also includes looking at what traits your child shares with you as a result of you having spent time together whether you are the non-genetic or genetic parent.

Language around donor conception has always been a minefield as we struggle to find new words for new relationships or try to make old ones fit. You might like to think about the term ‘donor’.  We have historically attached ‘the donor’ to the child so that we refer to ‘your donor’ when talking to them.  The truth is however, and this is borne out by the Morgan Centre research with gamete donors (see section on Donors) that the donor(s) gave his or her gametes or embryos to us so that we could become parents, so logically the donor is ours and not that of our child. Our donor(s) is actually our child’s biological parent(s), so perhaps the word ‘donor’ isn’t the right one to use.  However, using the term ‘biological parent’ in a social context can feel unwieldy and formal so ‘donor’ feels like useful shorthand in many circumstances.  Changing how we use the word ‘donor’ seems to be part of a movement away from euphemistic language and towards even greater clarity and openness about donor conception, led by some donor conceived adults.  But there is no orthodoxy here. Whilst all of us need to think about the language we use, it is probably best to let your teenage or adult child find the terms they are happy to own, and remember that these may evolve over time.

Those young people who are interested in their beginnings and want to explore the terminology around donor conception may end-up referring to the donor as their bio-dad or mum.  But many will continue to use the term donor, sometimes inter-mingling it with other terminology, perhaps even a nickname, depending on the context.  Whatever words are used by you or your child it is highly unlikely to be of real significance if the relationships and communication in the family are good, and if they are, then all is likely to be well.

Where surrogacy has been used, donor conception is almost inevitably part of the picture, unless an embryo created with the gametes of the intending parents has been used.  In traditional surrogacy, the egg of the surrogate is fertilised with sperm from the intending father (so the surrogate is the egg donor).  Gestational surrogacy usually involves a separate egg donor as well as a surrogate. The language used in surrogacy sometimes revolves around referring to the surrogate as the ‘tummy-mummy’ or alternatively using her first name to make it clear that mummy and daddy are the raising parents.  In her interview with Canadian journalist Alison Motluk, 21 year old UK surrogate-born Gee Roberts talks about knowing from a young age that she had two parents but also her ‘tum-mum.’ She now sees her surrogate (who is also her genetic mother) as an “auntie-type figure” or close family friend.

As with other family types, the language you use to describe your surrogate and your egg donor is likely to change as your child grows. It might be that the egg donation part of the story has felt like a minor role compared with that of carrying and giving birth to the child, particularly if you have an on-going relationship with your surrogate. If your egg donor is not also the surrogate, both you and your child might find yourselves wondering about what traits and likenesses she might have contributed, and a discussion about the complexities of the roles of surrogate and egg donor might be helpful.  You might want to revisit together with your child the place in your family life for both the surrogate and the egg donor as your child becomes old enough to have their own views.  

*For information on resources about the Morgan Centre project: www.manchester.ac.uk/egg-and-sperm-donors

The difficult stuff parents of DC people ignore at their peril

As I write, holed up in the office at the top of the house where Walter and I are living at the moment, some ground-breaking filming is taking place on the ground floor. Parents of donor conceived people, their children of all ages and DC adults are being interviewed about their lives and decisions, hopes and fears, thoughts and feelings. The resulting short films and clips from them, will be shown at DC Network’s workshops (and clips on the website) to help potential and actual parents of DC children to make the best possible decisions about having and raising DC children. The people included in the film are from all family types and have children conceived through all the different kinds of gamete/embryo donation, including surrogacy with egg donation. The difficult stuff will not be avoided.

Exactly what the difficult stuff consists of is succinctly contained in the advice to parents given by the young people I interviewed for Continuing the Conversation (see previous blog) and in the 2020 survey conducted amongst donor conceived adults by the organisation We Are Donor Conceived (WADC) https://www.wearedonorconceived.com/2020-we-are-donor-conceived-survey/

It also happens that Texan counsellor/psychotherapist Jana Rupnow’s latest podcast with four parents from around the English speaking world, also focuses on this hard stuff.  Give it a listen on https://threemakesbaby.podbean.com/e/parents-of-dc-children-talk-about-the-hard-stuft-part-2/

What is interesting is that the difficult questions typically avoided by parents on fertility forums and many Facebook groups are now being openly addressed by both donor conceived people and increasingly parents…and in ways that are making them accessible and almost unavoidable for the majority of potential and actual parents and the general public.  It is breaking through the layers of secrecy that have obscured the losses many donor conceived people feel.  Losses equal to those felt by people bereaved through infertility.

We Are Donor Conceived, thought by parents when it was started in 2016, only as a place where angry, largely American, DC adults went to moan at each other, now has an up to date website addressing a range of topics that every parent should read and in language that does not pull punches but is possible to listen to.  Highlights from the survey include the finding that those people who are told of their origins early do mostly find it easier to integrate the fact of being donor conceived into their sense of who they are…but it definitely does not prevent curiosity about and sometimes the need to search for genetic relatives.  This finding is absolutely endorsed by the mostly British young people I spoke to.

Another example from the WADC survey is that 81% of respondents did not support anonymous donation agreements and 67% believed that the donor’s identity should be available to the DC person from birth.  This finding challenges the vast majority of ‘treatment’ systems around the world and the second figure in particular is very hard for parents to hear, but it was nevertheless discussed intelligently on Jana Rupnow’s podcast.  Known donation is clearly advocated as the most person centred way of undertaking donor conception on the largest of the mixed* Facebook groups I am part of.  Seventy per cent of WADC survey participants believed that they have been harmed by not knowing the donor’s identity and 80% believed they have been harmed by not knowing the donor’s medical history.  I would say that the young people I spoke to, who had all learned of their origins from a very young age, did not feel as strongly as this, and one or two defended anonymity, but they nearly all wondered about their medical history and what the future might hold for them with regard to their health.

Very much endorsed by the British DC people I interviewed, was the finding that if parents seemed not to be comfortable talking about donor conception, then the young person would be unlikely to say how they really feel and might well search for genetic relatives without letting their parents know they were doing so.  No parent wants to hear this but it is very important that we as parents know that our attitude and approach to keeping DC on the agenda is vital for continued good communication in the family.

A WADC finding that was not shared very much by the British young people is that donor conceived people want to form relationships with their donor and siblings.   I interviewed two sets of half-siblings in their late teens and early twenties and they were all clear that these relationships had brought richness into their lives but none of them were very interested in their donor.  For teenagers or those twenty somethings who had yet to search, there was an interest in information about the donor but a much more ambiguous attitude towards making a personal connection.  However, today one of the people being filmed in my house was a woman of 35 who, despite having been ‘told’ from an early age, had been troubled about knowing where she fitted in life until she found her donor via DNA testing two years ago.  She now has a relationship with him and his family and describes herself as ‘content’.  Our daughter, now nearing her mid thirties, has also recently decided to  make a renewed effort to find her donor and half-siblings.  She wants to honour what she has long felt as an unmet need.

How do her dad and I feel about our daughter’s wish to find people she is related to on the donor side?  Certainly not threatened one bit.  Our relationships are strong and the fact that she has confided her needs to us demonstrates this.  We worry a little about her being rejected or being disappointed by what she finds, but otherwise we are 100% behind her.  I would not have predicted thirty-five years ago that we would feel this way now but times have changed. Donor conceived people have been letting us know for a long time that choosing to have a genetic connection to one parent (in single donation) and trying to deny the importance of a genetic connection to the other progenitor by choosing an anonymous donor is simply setting up a future loss for our children.  We must stop pretending that there is nothing different about donor conception.  Our children are our children but they are also inextricably connected to another genetic heritage that is not part of our families, unless of course the donor is a family member.  This is the fundamentally difficult truth that all potential and actual parents need to accept in their hearts and their heads, but the medical regimes that operate the ‘treatments’ mostly fail to prepare people for.  And sometimes, although not always, our children will need to connect with that other side to feel they have reached a place in their life where they can breathe more easily.

This is some of the difficult stuff we all need to think about.

 

*Mixed Facebook groups invite donor conceived adults, siblings, parents and donors to contribute to a conversation about the experiences and ethics of donor conception as perceived from different perspectives.  At best people listen and learn.  At worst they become defensive and sometimes abusive.  The best groups have good guidelines and are intelligently moderated.  

Pre-orders for Continuing the Conversation can be placed here -https://www.dcnetwork.org/products/product/continuing-conversation-talking-young-people-and-adults-12-years-and

Continuing the DC conversation with teenagers and young adults

Lockdown because of the Covid 19 pandemic has proved the perfect time to write, with my long-term colleague Jane, a booklet for parents of early-told donor conceived children who are now approaching or already in the teenage years.  It is called Continuing the Conversation.  This publication has had a long gestation time, partly because I wanted to interview a good cross-section of DC young people from all family types (and their views and feelings are at the heart of the booklet) but also because I moved house during the research process!  The content covers the developmental changes that take place at this life stage and the ways these might impact on a young person’s thinking and feeling with regard to their beginnings.  There are chapters on secondary school and how teenagers manage their difference in the face of biology lessons revealing the importance of genes and discussions on ethics around assisted conception in religious education lessons; on how parents can help prepare their child for a future where the donors’ known, anonymous or identifiable status will mean differential access to information and in particular helping parents to think about 2023 and beyond when the first cohort of 18 year olds in the UK will have the right to identifying information about their biological father or mother; re-thinking the meaning of genes and how important they might be to different people in the development of an adult identity and of course the revolutionary impact of DNA testing on the donor conception world.  There is also a special chapter for parents who have raised children in same sex or solo parent families as the second partner and/or ‘Dad’ question can make life tricky for children, particularly in the young teenage years.  The thoughts of both young people and parents about making contact with half-siblings and/or a genetic parent are explored.  The always difficult topic of language and terminology is discussed and a new way of thinking about a ‘donor’ is proposed, but this will be the subject of a subsequent blog.

Throughout the booklet Jane and I raise questions that can feel uncomfortable for some parents.  The choice of where they conceived their child and the impact this may have on their adult child’s choices for information or contact, is an example, and the importance of acknowledging the donor as a living human being who may well become known to their child in the future is another.  We emphasise the value that DC people place on parents listening to their feelings and being supportive of their needs, whatever they may be, and are clear with parents that unwillingness to talk about these things is likely to result in their child searching behind their back.

The final chapter is mostly given over to the advice that teenagers and young adults wanted to give to parents.  This question really animated my interviewees and they didn’t hold back!

Final tweaks are now being made to the text, a Resources page added and hopefully the booklet will be published and ready for sale both in pdf and hard formats in early Autumn.  We hope very much that parents will find this a useful tool in supporting their growing children as they mature and find their way in the world as people conceived with the help of a progenitor(s) who is not a raising parent but who may become part of an extended family unit.

Finally, I am hugely indebted to all the young people and parents who gave up time to talk to me in person, on the phone and via email.  Your stories and quotes have made the text rich and alive.  If you contributed you will be receiving a pdf copy of the final booklet.

dcnetwork.org/books

 

Donor Conception treatment on hold? This could be the time to do some good work

We are living in the strangest of times.  Told to keep our distance from those we love but don’t share a home with as well as stay away from our colleagues and friends.  Told not to leave the place we live in unless it is for a very short list of reasons.  Our minds are full of anxiety, not just for family but also for jobs, for our futures…

Donor conception would seem to come rather low on the list of things to worry about at the moment and if you have already started ‘telling’ your children this is likely to be true.  But if part of your future that is being put on hold includes plans for donor conception procedures either in the UK or abroad, you may be distraught that your hopes for a family are being delayed to an uncertain date in the future.  The HFEA have told all UK fertility clinics to complete the treatment cycles for those women currently mid-treatment but to put on hold for three weeks the start of any further cycles of treatment.  Chair of the HFEA Sally Cheshire, an ex fertility patient herself, has written an open letter to those hoping to cycle soon, saying how sorry she is that this has had to happen but that the decision has been taken on scientific advice. There could of course be further delays after this initial period.  https://www.hfea.gov.uk/about-us/news-and-press-releases/2020-news-and-press-releases/an-open-letter-to-fertility-patients-sally-cheshire-cbe-chair-hfea/

Those of you planning to go abroad will almost certainly have received similar information from your clinics, plus most international flights are cancelled and Spain, a popular destination for egg donation, is under lockdown at the time of writing.

The devastation some of you may be feeling is absolutely understandable.  There is nothing anyone can do to alter the circumstances under which we are all having to live at the moment, but here are some tips, both general and some specific to DC, that might support you through these difficult times and help you to use this time well to prepare for parenting by donor conception.

• If you feel sad, angry or anything else, let yourself feel the depth of that feeling. Cry, pummel a cushion, have a good scream.  Do whatever is necessary to allow the feeling to come out.  You may be exhausted afterwards but you will feel better.  All feelings are allowed, only actions that hurt yourself or others are not. Keeping feelings bottled up inside never does anyone any good.
• Try to stay in the moment, living neither in the past or the future. It’s not easy to achieve but worth the effort and can stop the endless what if’s (we’d made up our minds and done that cycle earlier in the year) or catastrophising (we’ll never have a family now).  We know it sounds boring, but slow, deep breathing really can help when you are feeling anxious and upset.
• Ideally talk with someone who is likely to be able to listen to you without judgement. Everyone is having to deal with difficult stuff at the moment but just having someone listen to what is important for you right now can be very helpful.
• When you are feeling calmer and hopefully more positive, think how you can use this extra time to help prepare yourself to be a parent by donor conception. Naturally your focus has been on your infertility or reason for using DC (either with or without a partner) and ways in which it might be possible to have your dream of a family come true.  You really, really want a baby.  But the majority of your relationship with the person you conceive, give birth to and raise will be with an older child, teenager or adult.  Now could be the time to think about what that relationship might be like if you decided that openness with them about DC was the right thing to do or you decided to keep the secret.  There is lots of information on DC Network’s website to help you make this very important decision.
• You might want to talk with your partner (if you have one) or a close friend about what having a child by donor conception means to you. Do you feel the egg/sperm or embryo that is going to help you conceive is just a clump of cells someone would have discarded anyway or are you able to acknowledge that it is a very real person (or people) who have allowed their gametes to be used to help you conceive.  Do you feel it is reasonable that any child you have might want to know about this person or people someday?  How do you think you might feel if you were a donor conceived child/teenager/adult?

All these not necessarily comfortable questions are important to think about before going ahead with a gamete donation procedure and here is a perfect opportunity to really think them through now rather than after a child has been born.  DC Network is a great organisation to support and help you in thinking about them all, no matter where your starting point is.  Email them via the website https://www.dcnetwork.org and someone will get back to you very quickly.

I hope very much that you will be able to resume your journey to a family later in the year when this Covid -19 crisis has passed.  In the meantime be kind to yourself and others around you, make good use of this extra preparation time…and know that DC Network is there for you.