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Donor conception dilemmas: decision-making, family building and managing differences #IVFWEBINARS

For some patients, the best way forward is through a donor. Despite its many advantages, donor conception is still considered somewhat taboo; as such, a lot of myths and stigma has risen around donation programs. What will the family say? What about friends? Should I even tell the child? How?

Because of the perceived stigma around the topic, these question often remain unanswered, leading to stress and anxiety. It doesn’t need to be that way, however; advocacy groups and specialists all around the world are fighting the good fight, informing the patients about the realities of donor conception, as well as dispelling common myths and offering counselling for patients. Leading the charge is the Donor Conception Network, whose Nina Barnsley agreed to come to us to talk about the most common issues and concerns raised by patients deciding to undergo donor conception.

Donor conception, although often presented as such, is not exactly a fertility treatment. It’s more of a method of bypassing the issue – the underlying infertility isn’t solved by undergoing an egg donation treatment, after all. It remains, however, an effective method of having a child despite your condition. It’s important to keep this in mind, as it frames the entire process of donor conception slightly differently from other techniques and methods.

As it is a different route to parenthood, it brings with it its own challenges and concerns. Broadly speaking, three ingredients are required to make a baby: an egg, sperm, and a uterus. In donor conception treatments, one or more of these elements is supplied by a person different than the intended parents. In the United Kingdom, where Donor Conception Network is based, patients can influence the donor matching process, as patient/donor anonymity is not enforced by law as it is in many European countries. Therefore, for patients in Britain, choosing a donor and deciding their importance to the overall journey to parenthood is another crucial step. Decisions like these can carry lifelong implications for the entire family, which is why it’s important to think everything through before committing to anything. Understanding and coming to terms with the entirety of the process will help you share the story of your journey with your child, when the time comes.

Your own feelings are also paramount to the entire process – being honest with yourself and acknowledging your own feelings is important. Although some parents are uncomfortable with the idea of donor conception at first, but change their feeling later, that is not always the case. For some, this route is simply not the right choice – and that’s a valid way to feel.

Donor conception is used by all sorts of people – heterosexual couples, as well as same-sex ones. Patients using egg donations, as well as those using sperm donations; some may even use a double donation or an embryo donation. Even single men and women can have children through donor conception (in the case of men, through surrogacy as well).

If anyone can become a parent, how about donors? Who are they? Well, they could be family members, friends or acquaintances, or donors found through a clinic – if the clinic is located in the United Kingdom, they will become identifiable to the child once they reach the age of 18. If you go with a donor matched for you at a clinic abroad, they will most commonly remain anonymous, as many European countries enforce anonymity in donation scenarios. In either case, the information provided to the patient varies from clinic to clinic.

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There are a lot of things to consider and think through before deciding on donor conception. First of all, where are you on your journey? Are you fully convinced this is the right step for you? Or are further back slightly, unsure whether or not this is the correct way forwards? If you have a partner – are they at the same stage as you? Take the time to acknowledge your feelings – as well as those of your partner – and make sure that you make this decision together and that you’re comfortable in it.

Single people experience a different issue – for them, the journey may feel quite lonely; having to make all these major decisions on your own does take an emotional toll, not to mention all the worries that come with the prospect of raising a child on your own. It’s never too early to start building a support network around yourself so that you can share the burden of the entire process with.

Another thing that needs to be worked through is letting go of the child that you can’t have. Most couples, especially heterosexual ones, don’t consider donor conception to be the way they were going to have children. As such, many people need to come to terms with the fact that the child they dreamed of is not the child they’re going to have. This letting go process will hopefully result in thinking about the child that they could have; this consideration should help you determine whether or not donor conception is the right path for you.

Following all of these, some practicalities to consider: for instance, where are you going to undergo treatment? Is it going to be in the UK, or are you going to travel somewhere else? Different countries have different laws, and different clinics have different protocols. It’s worth spending a lot of time researching your options to make sure you end up at a place that can give you exactly what you need. Also worth considering are the needs of your child – obviously, you can’t predict whether or not they will be curious about their donor, half-siblings, et cetera. If you decide to undergo treatment in a country with enforced anonymity of donors, your child will not have the option of learning about their genetic origin. Like we mentioned earlier, decisions you make now will have long-lasting implications.

Another practical consideration is the choice of the donor – how much information do you need, for starters? Various countries have different laws in regards to the donors; most European countries forbid revealing their identity, while the United Kingdom has no such requirement and allows children born through donation to learn the identity of the donor once they reach the age of 18. The amount of information you receive as a patient can also vary depending on the clinic, the legislation it’s bound by, and your own personal feelings on the matter – some patients prefer not to learn too many details and treat the donor as a simple necessity of the process, while others prefer to learn more about the donor and wish to establish a connection with them. It’s worth thinking what you personally feel is right, as this matter is decided as much by your own personal feelings as it is by laws and regulations.

If the identity of the donor is known to you, establishing clear boundaries and intentions with regard to you and the child is of utmost importance. Countries which enforce anonymity sidestep this issue; in countries that don’t, this gets complicated. Ideally, clear intentions and boundaries should be written down, preferably with a lawyer present, in order to record each side’s responsibilities and overall part in the process.

Parenthood requires a large investment; we’re not only talking about money, but also time and emotional energy spent on the entire process. Ensure you’re ready for it, that you have enough resources and support around you; establishing what’s available to you right now will help you determine how big of an overall investment of time and energy the process will actually require.

At this early stage, it is also worth thinking if you’re going to tell anyone about doing through with donor conception, as well as how you’re going to tell them. There’s certainly no pressure on you to tell anyone; some people prefer to keep the matter entirely private, while others prefer to tell close friends and family early on in order to receive emotional support. This is strictly a personal choice; consider your feelings and only commit to a decision that feels right to you.

Although this all may seem overwhelming at first, it’s important to remember that you don’t need to be perfect – you only need to be good enough. You need to be comfortable with the decisions you make and keep reminding yourself that there is no such thing as a perfect family; you will encounter challenges and difficulties on the way. Tackle problems and issues early, before they can develop into larger obstacles.

Emotions play a big role in parenthood, and patients who participate in donation programs get to experience some feelings other families may not. These stem from the particular circumstances these patients find themselves in. Chief among those feelings is the grief over the loss of a genetic connection between you and your child. For some people, this connection is hugely important. They grieve over a perceived “loss” – the child is genetically connected to somebody else, an outsider to the family. This ties in to parents not feeling like the child’s “real” mum or dad. This feeling, along with a fear over bonding with the child, comes from the same root worry.

Anxiety about sharing information about your conception process with other people is also common, which relates to a larger conversation about privacy. It is worth remembering that there is a boundary between privacy and secrecy – you can absolutely protect your privacy without keeping the issue of donor conception a secret. Another common worry is the donor – who are they? What is their impact on my family going to be?

Just like with potential emotional troubles, practical issues are also worth preparing for. Medical questions, for instance, are a common concern – since you’re not genetically related to your child, you may not be able to answer certain questions a doctor may ask about your child. Single people often worry about raising a child on their own – more often than not, they hadn’t expected to have to go it alone. If you’re in a lesbian relationship and only one of you is carrying the baby, you may not feel like you’re the real mum if you’re not the one to do it; the decision is tricky sometimes, which is why I strongly urge you to consider the issue as early as possible.

Openness is a big topic to tackle; after all, families aren’t built on secrecy. It’s difficult to manage a warm, loving environment when you’re keeping secrets from the members of your family. People conceived through donation programs deserve to know the truth – and furthermore, it’s harder to keep a secret of this scale than most people realise. Children aren’t stupid – they will notice subtle differences in looks or medical histories quicker than you think. Because of that, it’s better to have the issue of donor conception out in the open from the word go – literally! Experts recommend explaining the topic to children from as early an age as possible, in order to make the child internalise the circumstances of their conception as early as possible. Finding out in teenage or adult years can, after all, result in feelings of betrayal and mistrust – “What else have they lied to me about” et cetera.

Being truthful with the child is important even if the donor is anonymous. Crucially, it makes honesty the founding principle of the family. It helps establish an accurate medical history for the child, so that diagnoses and treatments aren’t affected by any misinformation. If the truth is hidden from the child, they may still have their own suspicions based on the differences in looks, temperaments and talents; these suspicions may become confirmed later on due to the increasing popularity of home DNA testing kit. As such, it’s much better to just be truthful from the beginning – you can tell it saves you from a lot of headaches and difficult conversations.

Despite all the arguments for openness, parents are hesitant to be open about undergoing donor conception. There is still a degree of embarrassment and shame associated with infertility – this explains the reluctance of some patients. Others simply want to keep it a private matter, as they don’t want to be judged by their family and friends. Some may want to talk about it, but have no idea how to broach the subject and what words to use.

A member of our network, Dominic, is a sperm donation dad. He describes his experience as such:

“Before our daughter was born it was all about me and how unfair it was that I couldn’t have my own genetic child. Now that she is here, I see that it’s all about her, and because I love her so much, I want to be honest with her about how she began.”

This is a common theme in many people’s journey – openness may be difficult as long as we think the journey is about ourselves, when in reality it’s all about the child; we come to that realisation when the child arrives, which puts things into proper perspective.

A common assumption made by parents is that telling the child about donor conception will be perceived as bad news. This couldn’t be farther from the truth – children have no preconceptions or assumptions about donor conception. For them, it’s simply a part of their story; they were conceived in a different, maybe more exciting way! They do, however, pick up on your emotions. It is important that you’re confident in how you approach the subject; the child will then receive the news simply as a piece of information and not as something potentially upsetting.

To sum up, here’s the basic principles of the decision-making process and the next steps to take:

  • If you have a partner, understand that you may not be at the same stage of thinking about donor conception – make sure you’re moving at the same speed
  • If you’re single, start “building your village” – surround yourself with family and friends who can provide emotional support for you
  • Give yourself as much time as you need to really explore your options and feelings
  • With that in mind, try and build a realistic timeframe to actually come to a decision
  • Consider attending one of our workshops or joining the Donor Conception Network!
  • Invest energy in the entirety of this topic – talk to us, talk to your family and friends, do your research, get counselling, talk to your partner, allow yourself to explore all of the difficult questions and feelings
  • Deal with the feelings of pressure before making important choices in decisions – don’t commit to anything because you’re overwhelmed
  • Decisions you make don’t need to be perfect – as long as you’re comfortable with them

Several questions can be asked to help decide whether or not donor conception is the right choice for you. Don’t force yourself to answer these now – allow yourself time to become comfortable with the prospect. How important are genetics to you? Would the “difference” be a problem? Is the involvement of a donor an issue? What’s more important to you – being a parent, or having a miniature version of yourself running about? Would you be comfortable talking about this to your child and your family?

The best way to approach, I feel, was described by Sam – he’s a young donor-conceived adult, who had this to say:

“People seem to get so stressed about it all. I think they should just chill out more. If they are anxious to do the right thing, they probably will do the right thing.”

The Donor Conception Network was founded specifically to help parents with these concerns and more – we’re a UK based charity, founded over 25 years ago on the principles of honesty and openness. We offer peer to peer support through our network of over 2000 parents, prospective parents, and donor conceived adults. We offer support navigating both the practical and emotional aspects of donor conception; we also offer many resources to parents and donor conceived children.

Donor Conception Dilemmas: decision-making, family building and managing differences – Questions & Answers

Question:

How do you select a donor? A clinic has offered us a donor, but we aren’t sure if they are right for us or not; we don’t feel a strong connection to their profile. Are we just being superficial?

Answer:

No, you’re not being superficial. The selection of a donor is really personal. You need to feel comfortable with the person you’re bringing into your life; for some people that means knowing as little information as possible and letting the clinic handle everything, others need to be sure the donor meets certain criteria that makes the choice feel right. Keep in mind that you only have access to a profile – you don’t actually know the person behind it. If you’re not sure about them, you need to think about why that is.

People get hung up on certain details, such as the donor’s education level or eye colour. You need to decide for yourself how much weight these aspects have for you. As an example, a lesbian couple spoke at one of our events some years back; they didn’t really have any criteria for their donor, except they wanted them to have brown eyes. Both of them had brown eyes, their families had brown eyes; it’s perfectly understandable to want your child to fit in. The child was born, and surprise, surprise – it was a boy with the brightest blue eyes. Do they feel unhappy because their son has blue eyes? Of course not, they still love him all the same.

I’m not going to tell you whether this particular donor is right for you; you need to figure out what doesn’t feel right about them on your own and whether or not this person is truly not the right fit for you, or if you’re making assumptions about what kind of child you’re going to get based on some arbitrary criteria?

That is not to say that you should just accept whichever donor is selected for you; it’s very important that you feel positively about the person.

Question:

How do you select a clinic? UK or abroad, guarantees or success rates; how do you navigate so many different aspects?

Answer:

Great question. When it comes to selecting whether to undergo treatment in the UK or abroad, it’s important to take the legal differences into consideration; in Britain, the donor will be identifiable when the child reaches 18 years of age. They will have information about the donor, information about half-siblings and the possibility of contact. Conversely, most European countries enforce anonymity between the patients and donors; contacting them will be effectively impossible. Another difference is the 10-family limit – in the UK, a donor can only create a maximum of ten families; this restriction may be different in other European countries.

Of course, there are other considerations – going abroad may be cheaper and quicker than receiving treatment in the UK, for instance. Another important aspect is the emotional needs of a potential child; they may ask if meeting their donor is possible, and the answer may not be no, given the advances in DNA testing. All of these things, however, can be managed absolutely fine. I would say that about half of the children in our network came from anonymous donors, so we have a lot of experience helping parents manage.

Clinics abroad may have different protocols from those in Britain; for instance, lately there’s been a large push towards only performing single embryo transfers as a precautionary measure for the benefit of the mother and child.

Success rates are another matter – I would personally be very, very suspicious of those, particularly abroad. Clinics in the UK are monitored by the HFEA – they have to present their results in a like-for-like way. You must be an assertive customer and do your own due diligence, as some of the foreign clinics will exclude information that does not boost their percentages; they will sometimes talk about pregnancies and not live births, which can artificially inflate success rates, so you want to make sure that the clinics are talking about live births, not just pregnancies. Some countries don’t have oversight bodies over these clinics, so you’re trusting them on their word. If a success rate looks too good to be true, it possibly is.

Like you said, there are so many different aspects to consider and navigate. You’d probably just like me to say “there’s four clinics we recommend, just pick one from these”, but it just doesn’t work like that.

Question:

Using a donor isn’t an issue for us; rather, the worry is how we will cope without having parents to help us.

Answer:

I can’t answer this question; it obviously is hard work being a parent. People do it successfully, however, and the fact that you recognize that it’s going to be a challenge is a good start – you’re not going to be caught unprepared. It is a hard job, but it’s easier if you build a network around you. You can start that now, and once you have your child, you will have many opportunities to meet other families with children and babies of a similar age… Do everything now, build lots and lots of connections, and don’t be too picky – then, as you make lots of contacts, sift through and find those you feel a good connection with and try to invest in those friendships. They won’t replace a family, but they are close enough.

Raising a child is a great opportunity for networking, as all parents want to connect and get to know others; all of us need babysitting from time to time, help with childcare or just another person to talk and vent out all our child-related stress. You can offer some of that and you can get some in return. Start early, invest in those relationships.

Question:

I am 43, I had my last FET transfer two weeks ago – it failed. It was my last embryo. My consultant informed me that egg donation would be the best option. My mum was with me and she said she disagrees with the whole idea as the child won’t have anything to do with me. I feel unsettled about how she feels. How do you manage situations when family members do not agree with decisions?

Answer:

Very good question. We have people who have been through that situation and have made it out the other side. The first thing to say is that it’s early days – people often pause a moment and ask themselves, “is this the right thing to do? Is egg donation a normal thing that people do?” – different people will take different amounts of time to go through that. It may be that your mum is at early stage of thinking “well, this is a bit odd”, but it doesn’t mean she’s going to feel that way forever. Once the baby arrives, nobody cares about how it got there – they just love the baby.

Ultimately, this is a common situation, where you may be faced with a big decision and a person close to you does not agree with your choice; it’s important to remember that in the end, this is your life, your decision, which you are making for yourself and not for anyone else. Your mum may never agree with it, but she may also change her feelings as the baby arrives and as the child grows into a person.

Question:

Does anyone ever experience bonding issues or have any regrets about going ahead with a donor cycle conception?

Answer:

Yes, people definitely experience bonding issues. The difficulty is knowing whether it’s the donor conception part at the heart of the problem. Bonding can be difficult, even if you’re genetically connected to the child – it’s not an uncommon concern. Like with many issues, you deal with it as it happens, you acknowledge it, you seek help, and you come out the other side.

It also helps if you invest the time before the pregnancy to really thinking through your fears and anxieties – even voicing a question like that is helpful, as it shows that you’re thinking about these problems, and I think that’s a good preventative measure which minimises the chance of the issue occurring. Even if it does, you’ve already raised the concern and it’s already a topic that can be addressed – it doesn’t become this shameful, unexpected thing you just don’t talk about.

As for regrets, that’s really tough to answer. I think parents may sometimes look back at the decisions they made and think that a different choice may have been better for the family; however, I also feel that’s true of all families. There are decisions we make on behalf of our children that they are not necessarily happy with. It’s a natural part of parenting to make lots of mistakes and to do a bit of learning on the job.

Question:

We used a local clinic as a two-mother couple and I kept meeting people – especially in twin groups – who used the same clinic. I wonder what I would do if I realised that someone I just met had used the same donor. Would I establish contact between the two families or not?

Answer:

That situation does come up. As with most things, there isn’t a perfectly clear right or wrong choice here and it’s a good thing that you’re thinking of it ahead of time, as it does seem like it’s a possible thing that could come up. It probably depends – if you do discover that the chance is high – on how you feel about the other family and how they felt about you; whether you had a sense that you could forge some sort of relationship that would be helpful and constructive for the families.

This is a difficult situation to be in; once you know something, you can’t “un-know” it – you can’t pretend that you don’t have suspicions or perhaps even concrete evidence that they used the same donor as you. It needs to be addressed honestly, but that does not mean you have to forge ahead with a hugely close relationship with this other family. You’re still two other families; the fact that you share a donor doesn’t have to mean anything. We know of families who forged relations based on the fact they used the same donor and it worked out fantastically for them; it’s not a guaranteed outcome, though. Go slowly, be cautious, don’t blur the boundaries too quickly and feel your way through.

Question:

Could you please explain how the non-anonymity thing works in the UK, as there are many patients going abroad looking for anonymous donors? What would you say to UK patients thinking about going abroad for that reason to encourage them to stay in the UK?

Answer:

I would start by telling them that it’s their decision – it’s their journey, it’s their family and that they need to make the decision they feel comfortable with. If I’m going to talk about positives of staying in the UK versus going abroad, I think that an important aspect is that they child may feel differently from them; while the donor’s identity may be irrelevant to you, it may not be the case for your child; I think it’s worth keeping “the door open”, so to speak, in case your child wants to learn more, discover how many half-siblings they have, possibly even have contact with them – I think it’s worth having that option.

There’s also other reasons to stay in the UK, such as the presence of an oversight body which makes sure that the clinics treat their patients well and work within well-defined ethical standards.

If the sole reason for going abroad is anonymity, I would mention that the landscape is shifting because of DNA testing; anonymity may not be as guaranteed in several years as it is now.

Question:

My husband and I have decided to pursue egg donation. We have had counselling and we feel positive about our choice. However, we are unsure whether to tell my mum, as I fear she might not support our decision. We also have a large extended family that loves to gossip and we are concerned about their reaction. We are considering keeping it from my mum and family, but we want to be open with our child. Do you see any way this can work?

Answer:

Yes and no. First of all, there’s no rush – when talking with a child, we usually recommend starting raising the topic with them while they’re under the age of five – mostly because at that point they have no idea what you’re talking about. As such, they sort of absorb it, but they don’t really get it; that’s the whole point. They’ll absorb the story, sift through it and when they do understand it at some later point, by then it’s not a big shock or reveal. Rather, it’s an established part of their identity.

What I mean to say by this is that you have a little bit of time to build your own confidence and think the situation through. If there are really, really serious concerns in the family, you could wait a little longer before telling the child. We only recommend that course of action if you know for certain that there are people in the family who are going to be actively hostile to you or your child.

I don’t think it’s possible to tell a young child and have absolute certainty that they’re not going to tell others; depending on the circumstances, it may not even be necessary. Unless you’re sure that someone is going to react very negatively, just go for it and be confident that you made the right choice for yourself and your immediate family.

Question:

How do you tell a child that they are from a double donation? I understand I should tell my child in their early years, but how do you explain it?

Answer:

This ties into the previous question – speaking with young children may be difficult for some parents, as they may have experienced so much heartache from failed attempts, spending so much time and money on their journey, the medical treatments, the anxiety, the emotional ups and downs… It’s important to remember that it’s the parents’ journey – not the child’s. The child does not have any of that emotional baggage; for them, it’s just a different, exciting way in which they were made; it’s just information. It is emotionally challenging for the parents, true, but I believe that we have the resources to help with that.

I would recommend you get a copy of our “Telling and Talking” booklet – they are intended to help parents build up the confidence in when and how to approach the subject with their children. We also have a series of children’s books called “Our Story” – one of them is intended for children who came from a double donation. It tells the story of how your child was made in a positive way.

Those two resources together should help you gain enough confidence to talk to your child; if you need more help, reach out to us, join the network; we have other parents who were in the same circumstances and they would be more than happy to share their experience with you.

Question:

Does DCN have any closed or private forums for potential parents to chat to parents of DC children? I would have found something like this very helpful and settling during my decision to use an egg donor.

Answer:

We currently don’t have a forum, but we’re actively exploring if we can relaunch it – there were some problems with the old forum. I’m hoping to have good news on that front in the next few weeks.

Question:

Do you have any resources in French?

Answer:

We don’t have any resources in French, I’m afraid. Our “Telling and Talking” booklets have been translated into Polish, Japanese, German, but I don’t think they have been translated into French yet.

Question:

Are there any studies on grown up children from donation cycles and what questions they commonly ask?

Answer:

No formal studies have been conducted, no. There is an organisation in the United States called the Donor Sibling Registry and they did a big survey of donor conceived adults, asking them all sorts of questions about how they felt and what was important to them, et cetera. There were a lot of great responses and it was kind of amazing to see it all in a big spreadsheet. I’m sure it’s still available, but it’s not a scientific study; it’s self-selective, a lot of people surveyed found out quite late or by accident – you have to remember that until very recently the professional advice was not to tell, to just pretend it never happened.

As for what questions they ask, they often are curious about their donors and their half-siblings, as well as their wider genetic family; parents often feel threatened by that, but it’s mostly just harmless curiosity.

Question:

I told my sister in law about our choice to undergo a donation cycle and she was completely disinterested. My sister was sharp with me when I told her about our previous IVF attempt, so I’ve not told her about the donation. I’ve worried so much about telling my family and getting this response has been very painful. Have other people experienced this disinterest and how have they gotten past the pain of it?

Answer:

My first thought, when you used the word “disinterested” was that she didn’t think it was a big deal, but now I’m guessing what you mean is that you were hoping to discuss the topic with her and she was cold and didn’t want to talk about the topic?

Relationships with people are complicated. The best thing to do is find people that you care about that can give you what you need – your partner, close friends, perhaps?

Family can often disappoint; don’t force them to be something that they’re not. They’re doing their best. Like I said in answer to a previous question, once the baby arrives, the situation may be wholly different.

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About the Author

Nina Barnsley

Nina Barnsley

Nina Barnsley is Director of the Donor Conception Network. The DC Network is a charity founded 25yrs ago to help break the isolation felt by so many people using donor assisted conception methods. We support people considering donor conception, offering help with the emotional aspects of the often complex decisions they are making. We provide a space to share hopes and fears as well as experiences of talking to children, and relatives and friends, about how the family came into being. We provide resources and support for the long-term as children grow up and the questions and family  dynamics change and develop.   The charity was founded on the principles of openness and honesty and most of what we offer is centred around helping parents build the confidence to be open with their children and others and managing the implications of that decision. The charity is there to support all donor conception families whether they are having (or have had) treatment in the UK or abroad and whatever kind of donor(s) they are using. Our members may have used sperm, egg, double or embryo donation, with or without surrogacy, and include single women and men, heterosexual and same sex couples as well as donor conceived adults.

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