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, who was the first Chair of DC Network, only 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 lovely grand-daughter; younger son Will married to Rebecca, and daughter ‘Zannah, a talented therapist and healer.  Then there’s Milo, a seriously noisy and annoying but ultimately lovable Siamese cat.

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The tricky question of ‘matching’

When Walter and I decided to use a sperm donor to have a child thirty-five years ago our doctor took a photograph of us both and said he would use a donor who ‘matched’ with our general looks, and particularly the skin, hair and eye colour of Walter.  We were given no description whatsoever and asked for none.  That was how it was in those days.  The assumption of the staff at the clinic was that we would not be ‘telling’ our children and they were surprised when we said that we would be doing so.  Thirty years ago ‘matching’ was almost certainly done to disguise the fact of donor conception.  If a child generally fits in with the colouring of their parents then people tend not to ask questions.  Our children, despite being MUCH taller than their dad, are like each of us in terms of hair, eye and skin colour and no-one has ever asked…but we told everybody anyway!  I think it feels comfortable for us all that we do ‘fit’ in this way, although in many others ways we are all very different.

Of course we all know families where children look very little like their parents or there is one sibling who stands out with red hair or strong features of some sort.  Jokes about the role of the milkman abound but most families feel very secure in the knowledge that a child is the genetic offspring of the person or couple concerned and these differences mostly do not cause upset.   Donor conception families are different.  There can be great sensitivity about looks when there is an unknown (anonymous or identifiable) donor in the mix.

‘Matching’ – at least in the UK – these days is supposed to be all about helping a child to fit in with their raising family, rather than as a way of keeping inquisitive questions at bay.  Information beyond a basic phenotype is given about the donor.  There may be a pen portrait and even a letter to the child.   Some choice about the donor is seen as being helpful for the intending parents to accept and adjust to using DNA from another person and for the child to be able to have knowledge about the man or woman who contributed to their existence available for them as they grow up.   But I know one donor conceived young adult who hates the idea that she might be the result of a shopping list that her parents set out as requirements.  She feels that as little as possible information should be available to recipients of donated gametes so that there are no expectations laid on the child and they are free to be who they want to be.  This of course raises the spectre of ‘designer babies’ and the potential for choosing features and talents in the donor that do not exist in the make-up of the recipients.  My experience in talking with intending and actual parents is that they don’t usually want exceptional IQ, looks or prowess in music or sport.  They want a child that will ‘fit’ with their family.  The problem is that if they happen to have a particular talent or interest, or are even educated to a particular level, and seek to replicate this in a donor, what happens when the resulting child does not appear in the slightest bit interested or is not academic?  Genetics plays tricks like that.

I have written before about a family I know where the existing child in the family is pale skinned and sandy haired and the younger child, conceived via an egg donor in Spain, has olive skin and dark brown eyes.  This child’s difference stands out, particularly in a rural part of the UK, where dark skins are rarely seen.  Before she was told of her donor conception the little girl was very confused about her difference to the rest of the family.  At meetings of DC Network many children with typical Spanish colouring can be seen running around.  They are all being told of their conception abroad and very often their origins are being celebrated in support of football teams and interest in Spanish language and culture.  We don’t yet know how these children will feel about this ‘difference’ as they grow older and have thoughts and feelings of their own, but at least parents are being upfront about it and are open to their children being curious.  Mostly these parents will have understood that it is likely that their child will share some features with their Spanish donor.  But what if parents are ill-prepared or just surprised at their own reaction when their child has dark skin, eyes and hair?  As I said before, genetics plays tricks like this.

In Spain, recipients of donated eggs are rarely given more information about a donor than her age and her blood group.  Many N.European intending parents are anxious to have a light-skinned donor so that a child will fit in their family (and sadly sometimes to hide the fact of egg donation), but as  Dr Raul Olivares of Barcelona IVF points out in an article on the website of this clinic, matching takes place with the donor but not with her sister, mother, father or grandmother.  There can be recessive genes that show themselves in the next generation, so absolutely no guarantees can be given that a light skinned donor will contribute to the birth of a light skinned child.

Whilst attempts to match for skin colour may produce a child who is obviously different, the same principle is true for any child, conceived with donated gametes or not.   There can be absolutely no guarantees that any child will have the features, talents or abilities of the two people who contributed their DNA to his or her existence.  Those who long for a mini-me are bound to be disappointed.

So ‘matching’ is complicated.  ‘Fitting’ in a family is on the whole a good idea, although obvious difference can be managed with openness. Information to give to the child is likely to be helpful but a list of required assets in a child is not good for anyone.  A disappointed parent is unlikely to raise an emotionally healthy child.  A child who has expectations placed on them because of features chosen in a donor (or in the unassisted conception world, parental demands) is unlikely to be a happy person.

Donor conception has always seemed to me to be an opportunity to raise a child or children in wonder and awe at their developing features and talents and to nurture them whatever they are.  Our son has become an amazingly successful business man; our daughter a therapist and healer, a truly spiritual person.  Are Walter and I like that?  No we are not, but we enjoy and celebrate the differences, loving our children for whoever they are.

https://barcelonaivf.com/en/egg-donation-because-light-plus-light-could-be-dark/

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Donor Conception: a surprising view from Germany

If, as a non-German, you were asked to guess what the attitude to donor conception in Germany would be and what was allowed and not allowed there, I wonder what you would think?  Although both Walter and I have been closely in touch with those active in the donor conception field in Germany for a long time, I think we were both still taken aback at the conference we attended in Goettingen at the weekend to realise how much influence the church, and specifically the Catholic Church, has in debates around both the ethics and practicalities of third party assisted reproduction.

The conference, brought together in a collaboration between the University of Goettingen, DI Netz (the much smaller equivalent of DC Network) and the German Society for Fertility Counselling, aimed to address the challenges, different approaches and family realities of donor conception in Germany.  Sperm donation has been allowed in this country for some time.  Embryo donation has been approved only recently -largely on the basis that it gives the possibility of life to otherwise unwanted embryos created in IVF cycles.  Egg donation remains outlawed because of the separation of motherhood between egg provider and gestator.  This of course does not mean that German women do not have egg donation -of course they do, they go abroad – but it does mean that counselling and guidance about egg donation have to be carried out secretly and that it is difficult for families with an egg donor conceived child to be open about it.  Surrogacy is also against the law, but again couples go abroad and face problems on their return.

The presentations at the event were designed to offer a broad perspective, so we heard from German ethicists, philosophers, doctors, lawyers and counsellors (sometimes in German and sometimes in English) plus excellent contributions from Sophie Zadeh from Cambridge UK about her research on solo mums by sperm donation and old friend Astrid Indeku from Belgium on women’s experiences of pregnancy and birth following egg donation.  There was also an interview with Sven, a donor conceived adult, by Petra Thorn, another long-standing friend who has done so much for DC families in Germany.  Sven had only discovered his conception status two years ago in his early thirties.  His difficulties in getting his parents to talk to him about this, even after his confrontation of them, was painful and sad to hear.

Walter and I had been asked to speak about a number of topics.  First of all, an update on our own story, now that our ‘children’ are in their thirties; then something about our experiences of the dynamics in families in DC Network and finally to try and pin down how it was possible to ‘grow’ DC Network from a very amateur kitchen table charity twenty-five years ago to the professional organisation it is now. DI Netz, still only in it’s fourth year, is of course very interested in this. We identified a number of factors – five  ‘all of the same mind’ families, with different skills and committed from the beginning to the simple philosophy of being parent led/child centred support group for anyone using donor conception and interested in being open or exploring being open with their children; four of the families being willing to do high profile publicity; not afraid to charge for membership and not being afraid to show leadership.  Of course DCN started in a very different era when it was possible to grow slowly and learn as it went along.  The internet, with it’s instant information and connection, makes users more demanding and social media, whilst offering the possibility of talking with others sharing questions and dilemmas, also has potential for abuse, making putting your head above the parapet a much dicier game these days.  Walter and I are much admiring of Claudia B who does so much of the work, particularly around the lobbying of parliament, for DI Netz and were so sad she was unable to be at the conference.

Although we were unable to understand the presentations in German, a combination of whispered translations from friends and some parallel slides in English helped us to get the drift of what was going on.  But I think understanding the detailed content of the two days was probably less important than the spaces in between when we were able to re-connect with old friends and colleagues and make new connections with like-minded people who are all fighting for a system in Germany that will not only remove anonymity for donors – a law to clarify what has been a very complex situation on this will come into force on 1st July next year – but to end the stigma of donor conception for recipients, donors and those born from third party assisted conception.  And for this to come about it will mean the church being challenged as the ultimate authority on these matters.

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The ordinary but extraordinary experience of another DCN conference

Next year is DC Network’s 25th Anniversary but before everyone gets their glad rags on to celebrate, let’s just acknowledge the success of this small but vibrant organisation by describing the 49th family conference that took place in Bristol this last weekend.  The venue is a secondary school, the only space that can accommodate all the people and activities that take place; a hall for presentations; a refectory for refreshments; many classrooms for small discussion groups; a large space or spaces for a creche to care for babies to twelve year olds; and more intimate spaces for a workshop for 8 – 12 year olds and a facilitated group for teens and twenties.  Members are welcomed warmly as they arrive – first-timers (particularly men and single women) looking anxious, and directions given to loos, the cafe and the bookshop and lending library, creche and children’s group.

After people, some with babies in buggies, are gathered in the auditorium and following initial welcomes and remarks, the Chair of DCN invites people to turn to the person nearest to them that they didn’t come with and introduce themselves.  What a contrast to the strained silence and eye contact avoidance of a clinic waiting room…and what a buzz of conversation as 120 people’s stories begin to be told.

The first item on the agenda this time is a panel of five children and young people – three male, two female – ranging in age from eleven to twenty-three and Chaired by a female donor conceived adult.   Whilst all panel members are donor conceived, they come from different family and donation types – two from solo mum families, the youngest boy from a same sex couple family and with a known donor and a brother and sister (same donor) from a heterosexual couple family.  One of the solo mum young people knows two of her half sisters (same donor) and the boy who has a solo mum is embryo donor conceived.  After they introduced themselves they were asked about their experiences at school – some having been open about being DC, others not – and about the materials that DCN have started to produce for parents to give to teachers in nursery and primary schools.  They had had time prior to the event to read the leaflets and most felt they were enormously positive and could be helpful for parents and teachers and very supportive for children.  Probably because of their invisibility as part of a ‘standard family’, the siblings from a heterosexual couple family were the only ones whose origins were not known about by their school and who felt there was little reason to share the information with teachers.   The most interesting part of the panel for me was when the Chair asked the young people about any times when they had had mixed or negative feelings about being donor conceived.  All except the youngest could recall incidences or periods of time when they had questions in their head that could not be answered or had felt unsure about themselves because of being donor conceived.  But they also recognised that being a teenager is difficult anyway and that feelings that were normal for that stage in life could become confused with feelings about being donor conceived.  I think everyone in the audience felt privileged to hear from such articulate and thoughtful young people.

This was a very hard act to follow, but two counselling psychologist researchers from the University of the West of England and The Open University did their best to give headlines from research into the well-being of DC children and their own research into embryo donation donors and families.  For me, the most interesting part came at the end when they said that differences between egg, sperm and embryo donation families and their children were beginning to emerge.  This is something that has been hinted at but not clearly identified before and I will be following up.

Hour-long facilitated small groups followed with participants divided into family type groups of around ten people to introduce themselves and talk about what they had heard in the morning.  As usual, everyone in my group ended up talking about ‘telling’ and a lively discussion about the word ‘sperm’ ensued.  Parents just don’t like it!

Lunch time is always a special moment, not just for falling on food following an early breakfast, but for catching up with old friends, making new ones and generally chatting with people who ‘get it’.  Parents are reunited with children who have been in the creche or children’s group and those without children yet are filled with hope that their time will come and that DC children do not have horns or ‘I am donor conceived’ tattooed on their foreheads.

Back in the hall, with most children safely back in the creche, the day continues with Network news and huge thanks to representatives of the Van Neste foundation for funding the writing and production of the leaflets for schools.  Nina also announces that DCN has had a grant for producing new story books to include surrogacy for all family types which gives an opportunity to update the illustrations in all the story books, and also some money to improve the training of volunteers working within the organisation.

And then, as Nina said, now for something completely different.  Repeating a performance she gave at the DCN London conference in April, one of the members, someone from a non-Western culture who has had a fascinating career in music and performance art, told the story of how she came to conceive her son by egg donation at the age of 56.  This is not an uncontroversial thing to have done and I personally have mixed feelings about it, but it was hard not to be completely charmed by her story-telling which included some fairly bonkers video clips from her earlier life.

We then adjourned to small groups again, this time topic based, mine being Telling and Talking with very young children.  Most of the people present had little ones by egg donation and one woman was pregnant with an egg donor baby.  Those with children said that they had started talking with their babies about how they were conceived but that now the children were verbal they found it very hard to continue.  After a few minutes of wrestling with why this might be, one woman very honestly and insightfully said that she thought it was because now her child could speak she was afraid of rejection.  There was a lot of nodding from others.  This fear is so visceral for parents.  We talked about being kind to ourselves but at the same time setting little challenges to get some of the words out there, using the Our Story book as an example of keeping the language very simple.  And talking of language, everyone in this group, apart from one, hated the word ‘sperm’ too!

The end of the day.  Lots of hugs, exchanges of contact details, last minute bookshop purchases, flurries of lost items of clothing, gathering up the books and flowers, taking notices down from the walls and a feeling of huge satisfaction at being part of something truly wonderful and ground breaking.  Just another DCN conference.

The Schools Project materials referred to are currently available only to DC Network members.  When the project is completed the leaflets will be made available to anyone via the DCN website dcnetwork.org probably for a small fee.

 

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Archers addicts everywhere: Henry needs to be told

Once again my apologies to readers outside the UK.  This blog is going to be about The Archers, a very annoying but to me rather addictive radio soap about people living in a fictitious village in the middle of England.  Although important things like Brexit rarely get mentioned, all sorts of domestic dilemmas do.  We have had deaths of various sorts, domestic abuse, numerous infidelities, gambling addiction, gay marriage and now surrogacy.  Chef Ian and farmer Adam, having weathered many difficulties in their relationship and now married, are contemplating having a child.  First of all it was by adoption but Ian, having been reminded by solo mum by sperm donation Helen, that he always wanted a baby of his own, is now thinking that surrogacy might be the answer.  On Sunday Ian announced that he had been in touch with a wonderful organisation that holds events all around the country.  This group is clearly modelled on Surrogacy UK and it is great that the couple seem to be keen on doing their surrogacy in the UK (for now anyway).  This is all fine and lovely BUT…

What about Helen and her son Henry who will be eight in January.  Now that husband Rob is well and truly out of the picture (long, long story involving coercive control and a stabbing) isn’t it about time Helen started to explain to Henry about his beginnings.  Does he tell children at school that his dad (he called Rob, who had parental responsibility ‘Dad’) has gone away; why does Helen allow Henry to continue to think that he is biologically linked to horrid Rob?  Of course his brother Jack is (Rob raped Helen) but Henry deserves to be told the truth and with the support of family all around him, could manage it.

Like Ian and Adam, Helen could turn to an organisation set up for families just like hers. The Donor Conception Network exists to give support and guidance to ALL families by donor conception.  She could even come to a Telling and Talking workshop or at least buy the Our Story book and Telling and Talking booklet, although with Henry’s age she would probably need both 0 – 7 and 8 – 11.

Dear UK readers, would you consider joining DC Network by emailing the BBC, tweeting or writing on the Archers blog about the failure of the scriptwriters to take on the the ‘telling’ of Henry?  It’s setting a very bad example by not doing so.

Update at 17th October:  It appears Henry may have been told already!  In a very recent instalment when Adam was explaining to him how it might be possible for two men to have a baby and spoke about the many different ways families could be made…Henry said, “Like the way my mummy had me”.  So the scriptwriters have got away with making it no big deal when putting a focus on the ‘telling’ could have been such wonderful publicity for the value of ‘telling’.  Shame.

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Both poetry and ethics can throw light on rights of donor conceived people

It is unlikely that anyone reading this blog will be unfamiliar with Charlie Gard, the child with severe mitochondrial disease whose parents have been fighting through the courts for the right to take Charlie to America for experimental treatment.  No-one could fail to be moved by the parents’ devotion to their severely ill son.  Until this morning I would have said that there was nothing that could be drawn from this case to help us look more clearly at donor conception families and the vexed question of rights of access to information.  But then I read the article in the Guardian by Ian Kennedy, Emeritus Professor of health Law, Ethics and Policy at University College London and realised that principles enshrined in law to do with the precedence of the welfare and rights of children, have just as much to do with donor conceived children as they do with a very sick child where there is a dispute between parents and doctors about treatment.  As Kennedy says, listening to parents is vital but passion and emotion are not a good basis on which to make decisions about the future of a child.  Of course a case like that of Charlie is heartbreaking but as a society we have to decide if there should be principles and rules to guide everyone when trying to make such hugely difficult decisions.

Whilst reading the article I found myself thinking about the Lebanese/American poet and philosopher Khalil Gibran whose book The Prophet was read by everyone in the 1960s and 70s who wanted to change society.  One line from On Reason and Passion came to mind – For reason, ruling alone, is a force confining; and passion, unattended, is a flame that burns to its own destruction. This plea for a balance between hearts and minds is what everyone involved with baby Charlie have been struggling to achieve and the intervention of American evangelists, the Pope and Donald Trump has done nothing but tip the scales towards emotion, making life even more difficult for parents and hospital staff alike.

Kennedy believes that the first step to using reason to guide decision making is to acknowledge that children do not belong to their parents.  And when I read this my thoughts immediately returned to Gibran.  I have always loved what he had to say about children because it resonated so strongly with my feelings about all my own children.  I’ll quote just the beginning but it is worth reading all the way through –

Your children are not your children.

They are the sons and daughters of Life’s longing for itself.

They come through you but not from you,

And though they are with you, yet they belong not to you.

Kennedy continues by saying that parents do not have rights regarding their children, they have only duties – the principal duty being to act in their children’s best interests.  It is of course children who have rights and any rights parents have exist only to protect their children’s rights.  He goes on to say that parents’ views as to their children’s interests should usually be respected but parents cannot always be the ultimate arbiters of their children’s interests.

For me, what both Kennedy and Gibran are saying is that having children is a privilege that carries huge responsibility.  Parents have a duty to, as much as is possible, put the interests of their children above their own desires and frailties.  I believe strongly that one of the duties of couples and individuals using donor conception to conceive is to acknowledge to themselves (no matter how difficult this is) that at some time in the future their child may wish to have information about and/or contact with the person who contributed their eggs or sperm to help bring them about.  Having recognised this, the parents’ responsibility is then to make every effort to find a known or identifiable donor and tell their child about their beginnings from a very early age.

There may be a right to do ones damnedest to try to have children, should that be the desire, but there is no right to have them and once they are here, the rights are all theirs.

https://www.theguardian.com/commentisfree/2017/jul/24/charlie-gard-tragic-respect-courts

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Respect, autonomy and the right to know one’s origins

One of the founding principles of the Donor Conception Network when it was founded 24 years ago was openness with children about the fact of having been donor conceived.   One of the main reasons for this was respect for our children’s autonomy and right to assign whatever meaning they liked to this information.  As the years have passed the organisation has realised that not only should children be ‘told’ they are donor conceived but ideally they should also have access to information about their genetic background and roots, should they choose to know about these.  DCN argued this case cogently when the government was considering removing anonymity from gamete donors.  With important testimony from donor conceived people and support from some professionals we won the day.

Research to support ‘telling’ and access to genetic origins has been patchy, sparse and recently subject to attacks by people like Guido Pennings who have questioned the empirical basis of such a stance.  He argues that parents should be able to choose to tell or not,  just like any other piece of information, not understanding or recognising that information about genetic heritage is NOT just like any other information.  It may or may not make all the difference to a donor conceived person.  The point is, it is THEY, not the doctor or their parents who should know about it and have choices as to any action they want to take.

Enter Professor Vardit Ravitsky from the Ethics Department of the University of Montreal.  Her writing on this topic is like a clear mountain stream.  It is she, with other colleagues, who wrote the excellent second refutation of the Pennings BioNews piece http://www.bionews.org.uk/page_847313.asp. and the other day I was introduced to the article Autonomous Choice and the Right to Know One’s Genetic Origins on which, I think, the latter article was based.  She argues that the inability to know ones genetic origins may cause some people great harm and others no harm at all, but that all are treated wrongly when they are deprived of the ability to access their genetic origins if they choose to do so.  She says, “People can be wronged without being harmed” and goes on to cite a case where someone’s personal financial information is made public but no harm is done.  However, there had been a risk that harm could be done and the same thing happens when donor conceived people’s right to know is violated.  Donor conceived people’s experiences and needs to know vary hugely – for some there may be a life-long struggle that has caused much psychological harm whilst others perceive the search as something challenging but ultimately fascinating and with the possibility of interesting new relationships.  For all of them, the right to know is grounded, not necessarily in a need for protection from harm but “rather in their autonomy to make choices about what their genetic origins mean to them at different points in their lives.  This choice is linked to fundamental aspects of human existence; our understanding of who we are and how we are connected to others.”

Ravitsky brings a cool, clear eye and some refreshingly unacademic language to the long debated questions on ‘telling’ and access to origins information.  As she says, “The right to know is not about giving DC people information; it is about removing barriers to access, barriers that we (society) created around a process we (society, fertility doctors and regulators) enabled.

Respect is all.  And it is good to know that the path DC Network instinctively followed 24 years ago is now so well supported and articulated so clearly and persuasively by at least a portion of the bio-ethics community.

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Shame and fear of DC parents needs empathy not ridicule

I am aware that I spend a lot of my time preaching to the converted.  I don’t think anyone who subscribes to this blog believes that it is in the interests of children that they are not told about being donor conceived.  I am occasionally a bit provocative and controversial but mostly I feel myself to be in the company of those for whom there are certain agreed bottom lines and being open with children and others is one of them.  But just like I think it is vital to listen to the whole spectrum of views from donor conceived people, I think it is also important to listen to those potential and actual parents who say that they are definitely in the ‘not telling’ camp.  Unless we really listen to what they are saying it is highly unlikely that we are going to be able to influence their attitudes or behaviour.

The people who run and post on the forum Fertility Friends won’t like it (I was chucked off several years ago) but from time to time I check on what they are saying there.  It is a public forum so I’m not doing something I’m not entitled to do.  The culture remains largely one of rather cloying niceness with clampdowns on anyone who expresses a  view that is not accompanied by a disclaimer that ‘of course not everyone feels this way’ and ‘we all have to make our own decisions.’  But just recently, people posting on the Not Telling the Child thread (Tellers strictly not allowed) in the Donor Conception section have become a little bolder and are letting us know some of the reasons why they won’t be ‘telling’.  It is important to note that the vast majority of people who post here do not yet have children so it is perfectly possible that they may change their minds as they feel more secure in their parenting as their children grow older.  But it is also sad to note the number who are requesting ‘management’ to allow them access to what I think of as ‘the Paper Bag on the Head’ section which allows non-tellers to communicate privately, without being exposed to any views that might counter theirs.

So what are they saying –

“My donor is anonymous so why would ‘telling’ help my child?”

“I want my child to have a normal upbringing.  I don’t want them to be seen as different in any way”

“(Telling)…is likely to cause trauma.  I want to protect my child from hurt and confusion.”

Lots of variations on the ‘Love is enough’ theme.  “Why do they need to know?”

“If you borrowed an egg from a neighbour to bake a cake, does that cake belong to them?”

All of these declarations, even the last rather bizarre one, seem to come from a place of fear…fear of a child asking questions that cannot be answered; fear of ‘difference’, fear of  doing something that is so upsetting for a child that they cannot be told about it, invoking shame as well; fear of rejection by the child and/or family and society.

It is easy for those of us who know that none of these fears are likely to come about to make light of these anxieties, but they are real enough and counsellors hear them in their consulting rooms every day…if people dare voice them.  Some don’t because of another fear – that of being judged.  It is clear from what is said on the Not Telling thread that non-tellers feel on the back foot, aware that the climate has moved towards openness.  The tone is defensive.

The challenge for those of us working in the donor conception world is to be able to really listen to the anxieties and fears of potential parents and let them know we understand where they are coming from.  Empathy is our most valued tool in reaching hearts and minds full of fear and it is vital that we engage with all potential and actual parents by donor conception because shame and fear are a very poor basis for raising children.

 

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