For fertility providers: how to create a best practice support program (Part 1)

“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.”

“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.”

 

We asked parents what kind of support they would have valued.  Some things were mentioned more than others, for example, high quality counseling was high on almost everyone’s list, but there were fairly consistent themes that emerged across the answers we got:

 

“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.”

“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.”

“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.”

“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.”

 

After analysis of all the answers we received, we can summarize what parents said they want into 6 key aspects:

 

1. More counseling for genetic grief and to understand the choices and implications of known versus unknown or ID release donors as well as the implications of raising a DC child.
2. Access to DCP perspectives
3. Support for talking to children about being donor conceived as well as guidance for raising a DC child.
4. Access to community support networks including counseling
5. Signposting to resources
6. Support with connecting to donor siblings.

What was clear to us was that parents felt betrayed by the industry, angry even, that in a vulnerable moment they were not given the right information to make important and life changing decisions.

“I should not have had to learn about the feelings of DCP about their own creation via social media. I should not have to be reliant on social media to connect my son with his siblings. The child should be at the forefront of all fertility planning and actions taken by clinics, donors and parents. Their rights to know their genetic relatives should not be an afterthought."

“[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 can clinics and banks do to change parent sentiment?  What support could they offer that would make parents feel they made truly informed decisions and that they are confident that they can parent a DC child appropriately?

 

What would a world class support program look like?

In our experience parents can expect most of the support they’ll get from their clinic or bank to take place prior to the birth of their baby. Once the baby has arrived there is often no further input. Recipient Parents are clear – they also need support from their bank / clinic after their baby is born. But why should banks / clinics provide this support? Such support will, at a minimum, help the bank / clinic to stand out from their competitors. However, we believe that they actually have an ethical responsibility to support the children they help to create, and this means giving the recipient parents the support they need, both before and after the birth of the child.

We have learnt through personal experience and loads of parents’ input, what is important to someone trying to conceive is vastly different to what is important when you are finally raising a donor conceived child. The support future parents anticipate they’ll need from a bank / clinic is different to the support they’ll truly value. This means people might well choose their bank / clinic without questioning the support they can expect after their child is born. Therefore, it takes ethics and vision for an organization to focus on their post birth support program.

Taking what parents told us they would have wanted, we think there are six elements to the support parents say they need, two of them are critical before embarking on a donor journey:  access to the voices of Donor Conceived People (DCP) and comprehensive, high-quality counseling (parents often commented that if counseling was provided, it was a tick-box exercise). 

The 6 elements to a best practice support program include:

1. Access to the voices and opinions of DCP (needed before commencing a donor journey)
2. Counseling (needed before and after commencing a donor journey)
3. Community support
4. Help with telling
5. Help with parenting a DC child
6. A sibling registry

In this article we will cover the “what” and the “how” of these elements, although we will cover the “who” (suppliers and providers that can help) in future updates. We will also write a blog showing the various support currently provided by the leading banks and clinics and how they map to our best practice support program.

 

Element 1  - Access to voices and opinions of DCP

 

Most parents in our survey only gained exposure to DCP opinions and voices once their children were well beyond babies.  This is too late to discover, as I did for example, that DCP really value the relationships they have with their half siblings at a point where we have no idea how to find those half siblings.  It’s too late to discover what DCP think of anonymous donations, or family numbers, or finding out late that they were donor conceived.  These are things parents need to know upfront before they embark on a donor journey.  This is not to put parents off having a baby with a donor, but to ensure they make decisions with the right information, that they really understand that parenting a DC child is not the same a parenting a child conceived naturally, that there are other considerations, responsibilities and actions that will come with it.  The vast majority of DC adults just want children of the future to be happy, without going through some of the suffering they themselves have endured.  They need to be heard.   Our children are future DCPs.

 

What to include in a program of support?

• Voices and perspectives of DCP
• DCP stories of what went well and what didn’t
• What DCP value
• Include content from experienced RPs about coming to this perspective late and how they would have valued earlier knowledge and content from RPs who came to this content early and the positive impact it has had on them.

How to include this in a program?

• Bespoke made video
• License material from the many excellent DCP sites and organizations already out there.

 

Element 2  - Counseling

 

The first thing to say about this element is that many clinics think they are already doing it well.  In contrast, most parents were at best dismissive and at worst scathing about it.  Even where they thought counseling was of sufficient quality, there was not nearly enough of it.  We can’t say this enough - recipient parents do not know what they do not know and to simply suggest they should get counseling represents an inadequate level of care.  Counseling needs to be mandatory, sponsored and of high quality.

In our 2023 survey, 38% of recipient parents weren’t offered any counseling at all and only 11% were offered more than one session. And, after the birth of their child, fully 95% of respondents were not offered counseling or any other support resources.

There is no shortage of qualified, experienced and available counselors in this space.  Clinics and banks need to work harder to engage with them.

 

What to include in a program of support:

• Counseling for genetic grief
• Understanding the implications of known vs anonymous vs ID release
• The implications of parenting a DC child

 

How to include this in a program?

• Provide access to high quality, sponsored counseling.

 

Element 3  - Community Support

 

There are several organizations globally that have been set up by either counselors, recipient parents or donor conceived adults that provide online resources, podcasts, webinars, forums, talks by counselors, meet-ups and other resources to subscribers.  In the UK, the Donor Conception Network  (a charity) provides resources and meetings for both those thinking about and those who have used donor conception.  But in our ideal support scenario, it is not enough to signpost people to these resources.  We go back to the idea that recipient parents don’t know what they don’t know, or what they need to know.  Instead, clinics and banks should partner with existing organizations so their offerings become part of the support offered by the fertility provider.

 

What to include in a program of support:

• Webinars
• Podcasts
• Talks by counselors
• Parenting DCP
• Talking to DCP
• Forums
• Support for DCP

 

How to include this in a program?

• Partner with existing organizations and counselors that already run programs.
• Sponsor subscriptions to existing community support programs.

 

 

Element 4  - Help with telling

 

It is no longer acceptable for the fertility industry to say that it is up to parents whether they tell their children about their origins or not.  The harm not telling causes is well documented and violates the child’s basic rights to know about their genetic make-up.  Clinics and banks should actively encourage parents to talk to their children about their origins and help them to do so.  Parents find telling hard, they don’t know where or when to begin.  Full 85% of parents in our survey received no support at all for telling. Fortunately, as with community support, there is an abundance of material to help, with many books written for young children to help with the telling.  Sensitive Matters’ books have the advantage of being able to be customized with the clinic’s or bank’s own branding.

 

What to include in a program of support:

• Branded, editable book to tell children about their origins (1-7)
• Branded, editable book to explore DNA and genetic mirroring (7-10)

 

How to include this in a program?

• Partner with Sensitive Matters to provide sponsored, branded, customizable children's books

 

Element 5  - Help with parenting a donor conceived child (DCC)

 

Just as raising an adopted child has different challenges from raising a naturally conceived child, so too does raising a DCC.  As one of our respondents said:

“I wish the fertility clinic made you get more education similar to that of adoption. I think it would be helpful for everyone.”

Some of the issues can be covered in community support, but some of the issues are really common and recipient parents of older children have already walked this path, as have adult donor conceived individuals.  There are very simple ways to help.  For example, some time ago I had an Instagram Live with Melissa Lindsey, the founder of Donor Conceived Community in the US.  We were discussing what to include or avoid in books for talking to children.  The conversation was very popular and Melissa had some terrific advice for parents.  It is this type of advice and nuggets of knowledge that need to be curated and distilled into something that parents can dip in and out of.   The most important thing is that information needs to include anecdotes from RPS and DCPS or counselors.  

 

What to include in a program of support:

• Curated booklets / online resources / webinars with FAQs answered by experienced RPs, DCP and counselors giving tangible examples.

 

How to include this in a program?

• Curated and regularly updated FAQs on your website or downloadable booklet

 

Element 6  - A sibling registry

 

This is potentially the trickiest element to achieve and in most cases might likely be the last thing clinics would implement of the six elements as it may take some time.  Why would each clinic or bank want to implement their own registry?  Because the registry should do several things:

• Allow parents to find half siblings from the same donor
• Allow donors to update their medical records
• Allow donors to update their status (e.g. from anonymous to known or ID release).

From the above list the reason each clinic should have their own becomes clear – the database will contain very personal information and medical records and so security is a priority.   Why would a clinic or bank want to do it at all?  Because the status quo is not good enough.   In our survey of donors, we were horrified by donors telling us that they tried to update their medical records but the clinics were not interested.

 

“They refused to give me any information and refused to notify my recipients of my updated medical info.”

“I gave them medical updates which I later discovered were not passed on to my recipients.”

 

It is clear that this is totally unacceptable.  If, for example, someone discovered they had a genetic propensity to an illness that, with knowledge, could be managed for a good outcome, then offspring need to know about it.  Clinics and banks have an ethical and moral duty to facilitate this.

In my own case, I was shocked to receive a very corporate legalese response to my request to ask our donor if she would consider changing her status.  I got the distinct impression that had my donor asked for her medical records to be updated, she would have received the same short shrift I did.  This is simply not good enough. 

Is it difficult to implement a sibling registry?  Yes, fairly.  Have some clinics or banks done it already? Yes, certainly. Is it worth doing?  Yes, it is the RIGHT thing to do. 

 

What to include in a program of support:

• Branded, organization specific database for finding siblings and donors that want to change their status or update their medical records

 

How to include this in a program?

• Implement a branded database

 

Creating a best practice support program

 

The idea of the six elements is that it is an ideal, ultimate goal.   It is not realistic to set out to create a whole support program that has all elements from the beginning, but it is possible and realistic to start a program with a few of the elements and build out your support program with feedback from your patients and clients.   There are several clinics and banks that have made great headway with incorporating many of the six elements into their offering already and we will give examples of these in upcoming blog posts.  The commercial benefits these organizations have experienced is clear: 

1. Industry partners favor them over competitors because of the support they provide and refer to them more often.
2. Customers favor them over competitors because of their support programs.

In this article, we have looked at WHAT to include in your program and HOW to include it.  The next step will be WHO to partner with and we will update this blog in the future with the names of suppliers and providers that can help with the various elements. We will also write a blog sharing the various support elements that the leading banks and clinics are currently providing.  In the meantime, assign a resource to give some thought to what your support program will look like.  Your patients, clients and their donor conceived children expect and deserve nothing less.

 

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