The picture was even more bleak for the amount of support that was offered after the birth of a child, where fully 95% of respondents were not offered counselling or any other support resources.

When it comes to supporting telling children about their origins, there is still an overwhelming lack of support, with 84% of respondents saying they got no support at all for talking to the children about their genetic origins.

In 2020, We Are Donor Conceived asked donor conceived adults if they thought the Assisted Reproductive Industry had a responsibility to act in the best interests of the people it helps to create.  In that survey, 92% of respondents said “yes”, but interestingly, in our survey a full 98% of Recipient parents felt the industry should do more.   This shows that today, recipient parents feel even more strongly than DCP did in 2020 about the responsibilities of the industry.

Finally, we asked Recipient Parents if they thought the fertility industry should do more to support parents using donor gametes with the psychological and social challenges of that choice, even beyond pregnancy.  Almost all of them (97%) said “yes”.

These are not close results: they show a glaring gap between what is needed and what is received.  What becomes clear from our analysis of the free text answers is something else that the fertility industry, community and standard-setters need to address: there is a large disconnect between what RPs feel and know when they are trying to conceive and what they learn and feel once they become parents.   

Parents approach this journey in one state of mind and emerge the other side with another.  At worst, when they come out the other side as parents of DCP, they are filled with regret and guilt and unresolved genetic grief, and at best they worry about the wellbeing of their children and the implications that being donor conceived carries.  In the main, this is something they become aware of only once they become parents, and once they become aware of the voices of DCP and other parents who are further down the road. This is the overarching take-away we are left with from our analysis and the theme of our main illustration. Our analysis shows there are four key parts to this.

1.     There is a lack of sponsored, mandatory, high-quality counselling to address the implications of having a child via donor egg, sperm or embryo.

When people are trying to conceive or going through the hoops of falling pregnant, their main focus is on their desire to have a baby.  The fertility industry knows this and excels at using the latest technology and years of data to suggest the right program to achieve pregnancy.  For hetero couples, the use of a donor is usually only considered after other options have been exhausted, so it’s unlikely parents have given the implications much thought.  For same sex couples, the need for a donor to have a child is a given, so they too probably haven’t given much thought to the implications.  Single parents have probably spent more time thinking about the implications of single parenthood than the implications of raising a donor conceived child. Unless prospective parents have prior experience e.g. if they are themselves donor conceived, the focus of parents at this point is not on the long-term outcomes and implications for their child.  In fact, unless they are exposed to the implications through counselling or their own research, they wouldn’t even know what the implications are.   Put another way, people don’t know what they don’t know when they go down the path of using a donor – they need someone, ideally a qualified counsellor, to guide them through this maze. 

However, our survey results show that whilst some clinics provide one session of counselling, it is often not taken seriously, or is provided as a tick box exercise.   Over 20% of respondents made some mention of counselling – either that it didn’t exist, wasn’t mandatory, or it wasn’t enough, or it was of poor quality. 

Respondents commented:

“It is a completely unknown world to us that we never imagined so we have no idea where to start or what we should be doing for ourselves and our future children.”

“I felt completely under-supported and have sought private counselling to deal with my emotional response to having a donor egg conceived child.”

Another was equally clear about the lack of information on the implications of use of donor sperm:

“Having used a private clinic I feel that IVF clinics tend to push the use of donors, without much support, because it’s a further path of business for them once other avenues have been explored. We used a sperm donor and I’m glad we did - but I’ve done lots of research since my daughter was born about the impact of this on her upbringing and I realise I wasn’t quite aware of all the implications for her. I wouldn’t change our path or our decision, but I wish more support was available.”

 Where counselling is offered, it is often of poor quality, inadequate, or felt to be a tick-box exercise:

“[Support] was offered but not enforced. It should definitely be a must do and with someone who isn’t just doing it to tick a box.”

“[I would have liked] more than one counsellor  to choose from for the compulsory sessions (the one at my clinic was not good, it felt like she did exactly the same session for every person she saw).”

“I would have valued more emotional support for ourselves, better resources for introducing my daughter to the concept,  and more information in general. I feel like it was a means to an end and our counselling session was a checkmark on a list, not something that was overly enlightening.”

“We were ‘offered’ one free counselling session (there were posters in the clinic, we found out it was free in the fine print of consent forms we signed immediately prior to transfer which was too late.) We were also not told what the content of counselling was in this context so didn’t pursue it as we didn’t feel we needed the emotional support - we weren’t told that it could include support around the use of donor sperm and the implications for our child.”

“The counseling session covered the first step in that it explored how we (the recipient parents) would handle having a donor conceived child and that the child should never not know they were donor conceived but did not explore any implications for the child, like identity development, dozens and dozens of half siblings,  loss of connection to a genetic parent, etc. There needs to be more than one required session and they need to explore all of these topics.”

2.     There is a lack of knowledge around known versus unknown donors

Respondents had treatment all over the world, including countries where it is still possible to have an anonymous donor.  It was clear from responses that at least 11% of parents did not feel that they were given the right information to make informed choices (these were respondents that specifically mentioned this topic).

One says simply:

 “I wish they would have talked about trying to find a known donor.”

Another respondent echoes the sentiment:

“I think education on anonymous vs known donors would have been helpful along with research on how adult children who are the product of a donor feel.”

These impacts last a lifetime as one respondent points out:

“I’ll continually be on a journey throughout the rest of my life and for my child as we learn and navigate together the path we chose, and the ramifications of having an anonymous donor.”

Tied in closely to the use of known versus anonymous donors is the lack of exposure to DCP voices.

3.     There is a lack of exposure to DCP perspectives for parents trying to conceive with donor gametes.

At least 10% of our respondents specifically mentioned the voices of the DCP as being missing at the conception stage of their journey.   This is perhaps the most disappointing part of the results since there are plenty of good DCP run sites that offer best practices and guidance for recipient parents.  Unfortunately, it appears RPs only become aware of them much later on:

“I wish they would have directed us to some of the Instagram and Facebook groups for DCP best practices.”

“Recipient parents need to be made aware of the voices of donor conceived people, where to seek these out and how to engage with them.”

“I think education on anonymous vs known donors would have been helpful along with research on how adult children who are the product of a donor feel.”

“All couples should have mandatory free counselling with advice on telling/supporting the child through understanding their identity at the very least. Ideally this should also include information from an ethical/donor conceived persons perspective about choosing donors before any purchasing of sperm or fertility treatment can start.”

“I've valued the support & advice from other recipient parents/advocates online, as well as Jana Rupnow's book Three Makes Baby. Listening & learning from actual DCP has been the most valuable though.”

“I'd loved to have been given links to DCP resources.” 

“[ I would have liked ]more honesty and comprehension on what DCPs value.”

4.     Parents worry about the wellbeing of their donor conceived children and how to raise a DC child.

As I discussed earlier, the focus of parents trying to conceive is on the desire for a baby. However, once recipients of donor gametes become parents, their focus shifts, as you might expect, to the wellbeing of their child.  Parents worry about how being donor conceived will impact their children’s identities; they worry about identifying siblings and about talking to their children about being donor conceived.

“It would have been more important to hear more about my future child's need than talk about finances.”

“We need support in understanding how important discussion of the donor is to our children as they build their identities, of the network of donor siblings and the huge benefits of engaging with these at a young age. We need to know about genetic mirroring, genetic bewilderment and the campaign work of DCP groups. We need to know how to be an ally to DCP because doing so creates a better future for our children.”

“[We need] Counseling to include information about DCP challenges, experiences and learnings. It should also include information about the importance of connecting with donor siblings, and genetic family. And definitely needs to cover why it is an issue for parents to say they will leave it up to their kids to decide if/when they want to know more about the donor, and siblings.”

What becomes clear from people’s answers is that they become aware about how serious the impacts of being donor conceived can be for the child, with one respondent even recognising that if not handled correctly, the experience can be traumatic:

“[We need] Connection with DC adults and organisations to know how DCP feel and to know how to bring up my child with as minimal trauma as possible.”

“As a mum who used a donor egg, I worry everyday about my daughter’s future and how my choices will impact her, and I’m scared at my ability to support her when I’m feeling so emotional about the process still.”

“I’m now 12 months postpartum and worry about if I’m doing the right things for my child to grow up feeling confident about her identity and how she came to be, it would be useful to have some free support, it’s hard to find someone that understands.”

“[We need] Prep for baby arriving and how to look after the mental health of the child growing up knowing they are donor conceived.”

The need and desire to connect with donor siblings comes through strongly in the responses:

“[We need] advice on telling kids they’re DC   Advice on contact with siblings, donor including how to find (consenting ) contact.” 

“[We need] Options to connect with donor siblings and donor.”

“More than an hour counselling with more discussion on how to support your donor conceived child before undergoing treatment. What issues may come up, should you find out about donor siblings while child is young or let it be their decision when they are older.”

“Guidance on how to find out about any potential siblings, and this process.”

“Clear pathways for connecting DC kids with their half-siblings.”

“Navigating finding diblings.”

Many parents do not know how to talk to their children about being donor conceived and need help with both the timing and how to go about it.  They need help explaining a donor egg or sperm to their child and they need help knowing when to explain donor and egg and sperm to a child.

“[We need] Advice how to tell the child about the donor.”

“[…] some support in talking to our child & others about the journey.”

“Help choosing a path, guidelines for telling the kids.”

“Resources on how to discuss with my child once she is old enough to understand. Also, resources on how to handle questions she may have regarding the donor.”

“[we need guidance on] how to talk to child about this throughout the years.”

What specific support do parents want?

The survey asked people what support they would have valued and respondents wrote free text answers.  Analysing free text is not an exact science, but in the order of frequency they were mentioned, there were five key areas of support that people felt were missing:

1. Counselling for genetic grief and to understand the choices and implications of known versus unknown or ID release donors.
2. Help in talking to children about being donor conceived and guidance for raising a DC child
3. Signposting to or access to resources.
4. Access to community support networks of recipient parents.
5. Access to DCP perspectives.

As I mentioned before, the provision of counselling before pregnancy is patchy – some clinics offer multiple sessions, some none.  For many, it is simply a tick-box exercise.  One respondent was surprised that the clinic they used in Spain offered counselling for donors, but none for recipient parents.

Almost no clinics or banks used by our respondents offer any support at all after birth (95%).

Several respondents mentioned they had found and read Jana Rupnow’s book, Three Makes Baby, and had found it helpful.

Becky from @definingmum and the founder of Paths to Parent Hub, believes recipient parents need “Counselling, guidance for each stage - decision making, pregnancy and parenting.”  Becky goes on to say “Using a donor to conceive isn’t just another medical treatment, it’s a whole new path to parenthood. Support is essential and in the best interests of parents and donor conceived children. If parents are supported they’ll be in the best place to support their children.”

Our take on the Survey results

So, is donor conception wrong? We are not against donor conception – it’s the way many of us had our gorgeous and much-loved children. It is the only way infertile, same sex couples and single parents can have children if they do not feel that adoption is right for them (and it is not right for everyone).  We are all grateful to the fertility industry for allowing us the opportunity to be parents.  But it is clear from the survey results that something is not working. 

Parents should not be discovering the voices of donor conceived adults after they have had a donor conceived child; they should not be left to regret their decisions about using an anonymous donor.  They should not have to discover the positive impact knowing half siblings can have on DCP when they have no idea how to achieve this for their children. Parents need to be armed with the knowledge to allow them to make informed choices they won’t regret later on. 

And herein lies the heart of the matter: the child and its rights and wellbeing are NOT at the forefront of all fertility planning.  The creation of a child is, but not the child itself.  If you see the end goal as the creation of a child, once a successful pregnancy is confirmed, you can pat yourself on the back and congratulate yourself for making another set of parents happy.  If instead, you stop to consider that you are creating a human being, with rights and hopes and thoughts all of their own, you begin to understand that you have a responsibility towards that person.  Can recipient parents be expected to understand this?  They need to, but they will not get there by themselves and right now, are almost being set up to fail. They need to hear the experiences of the DCP, they need to know they have choices about what sort of donor to use (it is out of the scope of this survey to discuss whether anonymous donors should be permitted at all – that is a topic worthy of its own article).  They need to know that parenting a DC child will entail different things from parenting a naturally conceived child.  You cannot adopt without going through training that prepares you for the challenges that adoption will bring.  Why should donor conception be different?   

So, why is it that clinics and banks do not expose RPs to the voices of DCP and the tips for parenting a DC child from experienced RPs? Why do they not provide comprehensive counselling? Are they afraid people will get cold feet?  If this is the case, I think it is unfounded. I have yet to come across an RP that wouldn’t do it again.  What they do often say, is that they would do it differently.  Besides, RPs are ecstatic once their baby is born and the clinics and banks know this. 

No, I think the reason is different.  I think clinicians see their role as going only so far as making someone pregnant.  Once that is achieved, everyone is happy, and they move on. They do not see themselves as responsible to the human being that is created.  Perhaps this needs to change, but begs the question, who will change it? Who regulates fertility clinics?  There are bodies that do regulate clinics in some countries, such as the HFEA in the UK and VARTA in Australia, but they do not (yet) mandate levels of support for recipient parents.

Clinicians, however, do see themselves as responsible to the parents who are their patients / clients.  They need to know that their patients are hurting and they are failing them.  We need to challenge them to rethink what a successful outcome looks like – not just a successful pregnancy, but parents who made well-informed decisions and are well prepared to parent a donor conceived child. Our challenge  to the industry is this: 

Remove the bubble and let the voices in; it is your responsibility to make sure recipient parents hear them.  Provide the counselling and support needed to allow parents to make informed decisions and parent appropriately.  Put the child’s wellbeing at the heart of fertility planning.

More information:

If you are a clinic and would like to know what you could do to provide more support, please email hello@sensitivematters.net.  Sensitive Matters is partnering with organisations in the UK and the USA to provide a more holistic package of support to recipient parents.

Our surveys for DCP and Donors are still open. To get the same quality of rich responses we did for the recipient parents survey, please encourage your networks to complete them.

Credits:

Our thanks to all who responded to the survey - both anonymously and those listed below:

Jenna

Julianne

@lauracorbinpac

Anna

@solo_mummy_donor_conceived

Leah C.

Eloise Edington

@definingmum

Becca

@donoreggspectations

 Sarah Kough

Emma C .

Kate Manfredi

Danielle LaGrandier

Laura M

Harmoni Wyraz - peace_n_harmoni

LuckyIrishMam

@ katherinenissen

Katherine Bateson

Jenna

Christina

Lydia

Hannah

Katherine  

@journaltobabyweavil, Kimberly Weavil

@ivfmama_angelmama

Special thanks to definingmum, parenting.theribbonbox; dccsupport; dcp_journey_2_rp  and all those that encouraged their followers to complete the survey.

© Sali Odendaal, 2023. All rights reserved.