Updated guidance on ‘telling’ for parents of donor conceived adults

It has taken a long time to complete but I am pleased to say that the updated Telling and Talking 17+ booklet is now available from DC Network.  It took so long because I wanted to go back and talk to some of the families that my husband and I have helped prepare to ‘tell’ their adult children over the last few years.  Not only talk to the parents but to their offspring as well.  It was a fascinating and very moving experience and the stories of five families are woven into the text.  I also spoke at length to an older donor conceived adult who discovered her origins when she took a DNA test for genealogical history reasons only to unexpectedly uncover an explosive family secret.  Recent UK research with donor conceived adults which will be the subject of forthcoming articles, was also made available to me.  With all this additional material I hope I have been able to produce a document that will encourage and support parents of adult DC people to ‘tell’ their children, whilst at the same time being true to the wide range of responses and feelings reported by DC people who have found out about their origins as adults.  It’s a balancing act but no punches are pulled.

As a taster, here are the Final Thoughts at the end of the booklet.  You might want to keep in mind that the intended reader is a parent or parents who have yet to ‘tell’ their adult child.

“Making the decision that your adult child should have the information about how they came into your family has probably taken you beyond where you would usually feel comfortable emotionally. None of us likes to be in this place for very long. It is impossible to say how your individual child will take the news but DC Network does not know of any donor conceived people who would have preferred not to know.

This booklet has focused a lot on loss. This is because acknowledgement of loss is an important step in the process of re-assessing the decision you took so long ago. Deciding that secrecy may no longer be in the interest of your child or any of you is a big step. Hearing the truth may cause your children to feel an acute sense of loss themselves. Loss of what they always assumed to be true, loss of trust and for some, loss of genetic relatives. That this is so should not sway you from trying to tell the truth about their origins as best you can. The message from the families I went back to talk to was that taking that stomach churning leap and ‘telling’ was absolutely worth it. Parents felt supported by the preparation they had sought and hugely relieved that they did not have to live with the secret any longer. Offspring were mostly very respectful of their parents for having prepared themselves so well and compassionate about the agony they had felt about keeping the secret for so long. There was relief at the explanation of differences between parents and children or siblings (although these exist in genetically connected families as well) and pleasure all round in being able to talk openly about family characteristics and what features and traits might or might not have come from the donor.

As with all family stories, in the end it is not so much about what has happened but the way we are able to make sense of it that leads to being able to integrate it into part of who we are. If the story you tell your child is coherent and rings true (probably because of the emotion that accompanies it) it will be much easier for your child to take in and sooner or later see your perspective, alongside managing their own feelings.

Putting your children’s feelings first is of course not always easy. Right at

the beginning and as time passes your buttons are likely to be pushed by memories and issues your children might raise and need you to respond to. This can stir up old feelings of sadness, uncertainty and fear. Such feelings are absolutely normal and part of parenting (which as you will know does not stop once your children are adults). But they do need managing and this means facing and dealing with them rather than pushing them deep down inside and trying to ignore them. Be kind to yourselves. You have taken an enormous step by ‘telling’. Continuing to acknowledge things you could have done better in the past can be helpful, listening to your children’s feelings is more than valuable, but getting help and support for yourself is also important. Talking with your partner or a counsellor or finding a close confidante as Philippa did, can help sort out the things you need to face and deal with and what your child now really needs to do on their own.

Feelings of loss or confusion can come and go over the weeks, months and years for your children as well as for you. Sometimes they may feel fine and at other times they may not. Donor conceived adults may need independent counselling – somewhere they can express themselves completely honestly and confidentially – either in the first weeks after being told or sometime down the line. Your support of their need for this is likely to be welcomed.

Deciding to ‘tell’ is not without risk or anxiety, but many worthwhile things in life involve some risk-taking. After all, we grow as people as a result of making courageous choices. There is much to gain for everyone.”

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Time for UK fertility clinics to Step Up

Last week I attended Progress Educational Trust’s evening debate about Add-Ons in fertility treatment.  These are the mostly unproven additions to treatment protocols like intralipids, assisted hatching, endometrial scratch and many others.  It was a fascinating evening in many ways, not least watching the tensions rise between clinicians as those working in the NHS challenged their private sector colleagues on both the ethics of offering scientifically unproven treatments and the large amounts of money that are charged for them.

I had gone to the event because PET debates are always worth while and I knew little about the subject.  It’s not something that comes up when I talk with people hoping to become parents by donor conception but I know that they are likely to be struggling with whether or not to seek one or more of these Add-Ons, particularly if they have had many unsuccessful cycles of treatment.  As pointed out by Sally Cheshire, Chair of the HFEA, success rates for IVF (with or without a donor) have now reached a plateau that is hard to see beyond and desperate potential parents are vulnerable to exploitation of the promises held out by adding that ‘magic something’ to the mix that will make a treatment work for them.

Both Adam Balen from the NHS unit in Leeds and Simon Fishel, founder of the private CARE group of clinics, drew attention to the fertility sector as being a very fast moving and innovative one.  ICSI (intra-cytoplasmic sperm injection), for example, was discovered accidentally and began to be used clinically without any real trials.  It has given very many men the opportunity to become genetic fathers but follow up studies of children conceived this way are beginning to show fertility problems for boys.  Fishel noted that many of the treatments and protocols in standard use today (including IVF itself) were red-flagged and seen as unethical when first introduced.  He claimed that “it was not easy to acquire evidence” and that these “unevidenced breakthroughs” have brought about the relatively high success rates we have today.  He cited Holland as being a country that only uses evidence based medicine in fertility treatments and has much lower success rates as a result.

I am not going to expand on how the evening progressed as that is not my main purpose here but suffice to say it unsurprisingly turned out that money was the bottom line – shortage of funds for research (fertility treatments not being seen as sufficiently serious by funders) and the huge sums being charged by some clinics for unproven Add-Ons.  If you want to read more about the event, PET will be producing their own summary and I highly recommend their free on-line publication Bio-News. Also the new HFEA website (up shortly) which will give ‘traffic-light’ guidance to patients about Add-Ons.

I really wasn’t  there for donor conception purposes, except that as the evening wore on I was struck more and more forcibly by how some medics find it convenient to put aside evidenced based medicine and their own gold standard, randomised controlled trials, when it suits their purpose (and pocket).  I cannot recall how many times those of us in the donor conception world have tried to convince fertility doctors of the importance of ending anonymity for donors or that early ‘telling’ is best for families and children, only to be condescendingly asked ‘where is the evidence for this?’  Explanations about secrecy over the years having made decent research very difficult or lack of funding for something as ‘niche’ as the well-being of donor conception families, are tossed aside as they assert their status as doctors who only take notice of evidence-based research.  In addition, several times during the evening panellists talked about the importance of following up children conceived via ART because ‘we have a duty of care to the families of patients.’   I suspect that sadly this duty of care only refers to possible consequences of medical procedures rather than taking into account how a child might feel about not being able to find out information about their donor because the clinic had referred their mother for treatment abroad.  It remains a scandal that UK clinics do this too often without explaining the differences for the child between being conceived inside and outside the UK.

Fertility doctors are not bad people but, as Raj Mather from St. Mary’s, Manchester said, there is a culture in every clinic that is set by the owners or senior clinicians and this influences the way that all staff, including doctors, work.  He implied and I am translating: If the bottom line is money then what is offered to patients will be influenced by this.  I also believe that if the prevailing culture is simply on making babies  (as well as making money) and not on the psycho-social well-being of future children, then we are all poorer for it.

As Sally Cheshire said, STEP UP, FERTILITY CLINICS.

Link to Bio-News summary of the event Add Ons: Do They Add Up http://www.bionews.org.uk/page.asp?obj_id=814093&PPID=814006&sid=690

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

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

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

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

Watch this space or tune in…

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

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What parents of un-told DC adults need to know

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

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

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

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

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

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

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

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

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

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Genetics as we live them

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

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

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

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

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

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

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

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Love and grief revisited

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

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

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

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

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


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

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

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

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

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