This post will be considered heresy by some, but I think it has to be talked about. Are there circumstances in which it is OK not to be open about about donor conception? Not only OK but actually in the best interest of that child and his or her family?
I need to say first that these are views that are very personal to me and that there are plenty of people in DC Network and elsewhere who would not support them, but here goes. Openness to me means first and foremost being honest with children about being donor conceived. Not leading them to believe that they are genetically connected in the way that they would expect and assume unless informed otherwise. Beginning to share the information with children from a very young age- before they are able to fully understand the implications – also seems to help children feel comfortable with their story. So far so good in most Western cultures. But what about children from faiths, cultures and communities that find donor conception unacceptable? Where children would find it hard to feel proud about their beginnings because of disapproval or even rejection by family and those around them.
A rather harsh but understandable response to this might be to say that donor conception should not be used by people whose faith or culture forbids it. However, it tends to be the communities that reject assisted conception who also value above almost anything else the ability to have children. Women (for infertility is sadly so often assumed to be only a female problem) who fail to conceive are diminished in status and can become outcasts. It is unsurprising that IVF and donor conception flourishes in private clinics in the rich Gulf states. The poor do not have access to such solutions. What happens in other countries is of concern but out of our hands, but what of minority ethnic communities in the UK, or indeed members of the Catholic church in this country or people living in areas like Northern Ireland where the guarding of personal privacy and neighbour nosiness have long coexisted as two sides of the same coin. Where do we draw the line in saying that the best interests of the child are served by not telling him or her about donor conception?
I know many UK clinics assume that minority ethnic recipients of donated gametes are never going to ‘tell’ so they don’t bother talking to them about this possibility. This attitude is not only patronising towards and lacking in respect for the individuals concerned but also disrespectful to the concept of openness itself. If ‘telling’ is truly accepted as better for relationships in families then minority ethnic couples need to at least be informed about the benefits and offered ways in which they may be able to adapt the principles to fit with their beliefs and culture. In addition they need to understand the laws and regulatory framework under which donor conception occurs in the UK and know that their children will have opportunities in the future to find out if they have been donor conceived if they suspect something is amiss in the future. In fact by keeping the help they have had in conceiving from their children they will be running all the risks that any other family does when there is a big secret at the heart of family life. This applies also to Catholic families and those living in small and small-minded communities. There are undoubtedly very hard decisions to make.
Does ‘telling’ always have to start early? What has come to be the orthodoxy says yes. People contact DC Network sometimes worrying that their child is now four or six and is it too late to start? No of course it isn’t. Ideally children are introduced to ‘their story’ along with their mothers milk, but if for a range of reasons this is not possible, then telling can start at any age. If a child really could be at risk within their community (and I’m not talking about school-gate chat or neighbourhood gossip here) then leaving introducing donor conception until around the age of 8 could be an important compromise. The child is respected by being told but is old enough to understand that not everyone needs to know this information. What will make a difference is how they are told. A child given information by parents who are confident and comfortable with using donor conception is likely to receive a very different message to a child whose parents feel guilty and ashamed about their method of family creation. For this reason people from any communities who might find openness difficult are in fact deserving of more rather than less time from clinics than those for whom openness poses no or little threat. One of the problems here however, is that many clinics consider the requirement placed on them by the HFEA Code of Practice to let would-be parents know that ‘telling is best’, to be a tick-box exercise rather than a responsibility to the family they are helping a couple to create.
So maybe, just maybe, the answer to the question posed at the top of the page is that donor conceived children in all UK communities can (and should) be told, but that for a very few it may be necessary to wait until they are a little older. In the meantime parents are deserving of more rather than less support from clinics and patient organisations.
Another situation where the question arises about children being told is where a child has a really severe developmental or learning disorder. I’m not talking about Down Syndrome here, but someone at the far end of the autistic spectrum or with a dramatically reduced capacity to learn. Is it patronising to assume that ‘telling’ about donor conception is going to be at best information that is redundant to their life or at worst upsetting because it is only partially understood? Or is it important and respectful that the information is conveyed in a developmentally appropriate way and it really doesn’t matter if it is not understood? This is something I remain conflicted about, particularly worrying that parents of children with profound disabilities have so much else on their plate that explaining about donor conception seems rather low on the list of responsibilities and priorities. But some people can get very heated about this sort of thing.
In her excellent book Mommies, Daddies, Donors, Surrogates; answering tough questions and building strong families, clinical psychologist Diane Ehrensaft proposes that there are only three good reasons for not telling children at all or postponing telling to a later time. They all put the needs of the children first –
1. Issues to do with a child’s ability to understand: a child with a significant learning or developmental problem may well not be able to take in information about his or her origins.
2. Issues for the bond between parent and child: for instance if a parent has been away from the child for a long time, the re-building of this relationship should come before telling. Issues for the child from outside the immediate family: if wider family members or those in the community are likely to reject a child conceived by donated sperm, egg or embryos then it may be difficult for a child to feel any sense of pride about their origins. This situation can apply where a child is being brought up within a culture or faith that disapproves of donor conception.
Ehrensaft, however, goes on to point out that parents need to be very honest with themselves. Concerns that a child may be upset or confused by being ‘told’ can cover anxieties and fears that properly belong to the parent and are not really to do with the child at all.
Amen to that.