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Thursday, June 16, 2011

What Would I Have Wanted to Tell My Mother Before She Conceived?


A recent comment and inquiry on my blog inspired a response too long to respond in comment so I opted to make it a post. 
The Comment:

On June 16, Hang on Little Gertie wrote...
Visit "Hang On Little Gertie" the Blog
Hello, I've found your blog to be a very good and informative but difficult read for me. After 8 years of talking and research (including meeting with one of the UK's leading psychologists and a woman who has done the longest ever research project into the health and wellbeing of the children of donors and same-sex couples - click here - ie this has been a very well researched decision!) a year ago my partner and I went to a clinic in London in order to attempt to have a baby with a sperm donor. My partner then left me just before our first attempt and a year on I am ready to have another go. My partner and I were very welcoming of the change in UK law to rule out anonymous sperm donors (although obviously it has meant a vast reduction in the number of available donors). I just wondered what your thoughts were on this issue. I also wondered what your thoughts were on the amount of information that should/shouldn't be given to prospective parents. As an individual I find the range of choice overwhelming but as the hopeful parent of a future child I'm persuaded to think that the more information the better until that child is old enough to decide whether or not they want to seek contact with the donor (and then the clinic would pass on the contact information)? 
I admire and respect the way you have articulated your thoughts and feelings in this blog and would be really interested to know your thoughts.

My Response:
Hi there “Hang on Little Gertie”  - Thanks so much for your candor and sharing. Already that tells me you are approaching the situation in an open and healthy manner. I'm very touched that you have asked my opinion. It is a caring and truly maternal gesture that speaks volumes about how much you already care about your future child.
As I have said before, my gut wants to say “don’t do it,” but I’ve come to the realization those worlds are rarely heeded. I more effective in helping future DC children by advising on what I would deem best-case scenarios. While I don’t think any AI scenario is ideal, if chosen parents should know as much as possible about donors. When possible they should seek donors willing to have some limited contact with the child. I know it is harder to find non-anonymous donors and even more difficult to find donors willing to keep in touch, but this isn't your child's challenge or problem. Since you want a child, you should take on the responsibility of seeking the very best conception scenario. 
I know this is a long shot, but perhaps there is a gay male couple that needs an egg donor and would be willing to provide their sperm to a lesbian couple as well as be accessible to the child down the road. I actually know of two couples that did this and it has worked out rather well, creating a somewhat unique extended family. Some people gasp when I say this....'how can I give my eggs/sperm away?" but that's completely hypocritical to me. How is it not okay to donate your eggs to another family but it is ok to use another anonymous man's sperm?
More generally, I've often thought about what I would ask of or share with my mother If I could rewind and travel back in time 30 years before she conceived.  Here are two things that come to mind immediately.
1- Acceptance and Validation of Loss - My mother's father died when she was 14 and it was a pivotal moment in her life. Regardless of how much a child knows about their parent or the means by which they loose a parent, the child feels a loss. I would have asked to her to think of her own experience of loss and come to terms with some of her feelings in preparation for my arrival.
If she were more accepting and aware of the loss that I would suffer when I realized I did not have access to my genetic father she could have better related to my pain. She would also have been more prepared to support me when I felt as if someone had died in the early years after I first learned the truth. Even in "right to know" situations where the donor's identity in not concealed, the child can feel they have missed out on having that individual in their life, or still be unable to locate the parent.  AI parents react negatively when I explain that all of the DC peers I have encountered universally experience some sense of loss at some point after learning the truth. It's as if the parents don't want to believe any decision they made could create pain for their children, which I can understand. Some of my DC peers have mother's who still disagree with their children to this day about how they "should feel."  However, I believe if you do not deny your child’s loss, opting instead to accept and support, you validate your child's feelings making them feel less alone. 
Imagine I were to go up to a very small child who just lost a parent they only had 2 or 3 years of their life to know and told them shouldn't feel upset because I had remarried. Imagine if I told them they were being ungrateful in their tears because they had a father and the father that died wasn't their real father. I bring forth this troubling imagery not to manipulate but to depict a realistic scenario of loss. AI can enable an unhealthy level of detachment from kinship and emotion. Just because you will not know the face of your child's biological father and just because a child is fathered by an individual who chose not to be in their lives does NOT invalidate their need to grieve or your responsibility to support them. 
If we can work together as a community of DC kids and parents to acknowledge this loss and avoid the denial that runs rampant in the media and online, we’ll all move forward in a more positive direction.
2 - Avoid Secrecy and Shame - A number of studies, including this one, have pointed out it is best to tell children early about the nature of their conception. This is where being a single mother or gay or lesbian couple is more positive because the lack of a biological parent is evident and must be explained. My mother and father like many other heterosexual couples were told to conceal the truth. This set the stage for secrecy, shame and eventual betrayal. Secrets are insidious forces that fester in the creases and corners of family relationships and burden your child. Be as honest as possible to your child, sharing age appropriate information as soon as you can. They should bare as little burden of shame and secrecy as possible.
I could definitely write more but as I have a day job to keep, I will need to wrap it up here :)  Please feel free to comment in response or email me at girlconceived@gmail.com with any other questions you may have. In addition, I recently added a few of my responses to commonly asked questions on my Parent’s Dealing with Infertility page.
Again I can’t express enough how much I value the opinions and insights of parents considering AI. In many ways it allows me to engage in discourse I feel I was in some ways denied and offers great satisfaction and peace. 
So, thank you. I wish you the best in your endeavors.
Sincerely,
Girl Conceived


UPDATE - A response from LittleGertie can be found on her blog at http://hangonlittlegertie.blogspot.com/2011/06/unexpected-connections-in-daily-life.html




17 comments:

  1. Thank you so much for such a considered and thoughtful response. I tried to post a comment but I found I had written too much. Instead I have posted a response on my own blog which seems to let me carrying on writing without limit. My thoughts can be found here if you would like to read them: http://hangonlittlegertie.blogspot.com/2011/06/unexpected-connections-in-daily-life.html

    Thanks again for sharing your thoughts with me.

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  2. This is directed to Hang on Little Gertie in regards to the original question posted. You stated that the number of donors dropped dramatically since anonymity was outlawed. I wonder where this information was obtained? The reason I ask this is that it is often either the common assumption to be the case or it is propaganda and scaremongering by the clinics and media. The HFEA which controls reproductive technologies published the number of donors and in fact the number of sperm donors increased since 2005 when anonymity was removed.
    http://www.hfea.gov.uk/3411.html

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  3. Hi Damian -That's a really interesting link and great clarification. It looks like there is an ebb and flow and the count is indeed increasing.

    On a side note, what do you think accounts for the difference in numbers of egg vs. sperm donors? I always thought it was the other way around, i.e. more sperm than egg donors available.

    Thanks, Girl Conceived

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  4. The egg numbers also include those that do what is termed egg sharing.
    I could be wrong but from memory I think in the UK they have a system set-up where your treatment costs are reduced greatly if you also donate eggs yourself (egg share). In these instances there would be a monetary inducement (by reduction) for you to also donate eggs while you are undergoing treatment yourself.
    Those numbers in the HFEA graph are "new" donors and do not include current donors. It would also be fair to say that it would be easier to donate sperm many more times a year than to donate eggs. The graph does not show the number of actual donations (or treatments that could be made from donations) which I would imagine would show something quite a bit different.
    However the assertion that donor numbers plummeted and that they had difficulty recruiting as a result of anonymity removal is a furphy (erroneous rumour).

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  5. After 8 years of talking and research (including meeting with one of the UK's leading psychologists and a woman who has done the longest ever research project into the health and wellbeing of the children of donors and same-sex couples - click here 

    haha why wasnt i surprised when i saw Golombok's name when i clicked here? unfortunately both kramer and golombok still dominate the industry.

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  6. Hi Damian, I guess it depends which HFEA report you read about donor numbers: http://www.hfea.gov.uk/6285.html to be honest my comment was based on overhearing conversations at the clinic more than anything else.

    Hi anonymous, why do you think it unfortunate that Susan Golombok's research is still so widely read? Personally, I welcome all research in this area, whether I agree with the interpretation or not.

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  7. Hi Hang on
    your HFEA link then just flows into the figures on the link I provided (when you follow the links on the site). So same data. But in their write up they do give the impression that more donors are needed.
    Clinics certainly have a biased self-interest that is predicated by the almighty pound/dollar, so I always take what they say with a pinch of salt. In this case it would be a bucket as they provide these figures to the HFEA themselves.
    The consultation in that link you provided was seriously flawed. If you go to the Bionews website the review gets slated not just by me but by well recognised and respected researchers in the UK.
    One problem with the Golombok studies is that they have so far only focused on children, not adults. Things certainly didn't change for me or many other I know until we were considerably older.
    All the best.
    Damian

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  8. i think it unfortunate that only golomboks research is read because she only proves the same thing over and over again, that donor conceived 'children' are fine and only a small minority suffer.

    the reality is that children become adults and have the same life long difficulties that adoptees experience.

    i havent been involved with dc for quite some time but would have hoped that, by now, more enlightened views and research based on the findings conducted on donor conceived adults was now widely available.

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  9. Hi Anonymous - I respect the work that Susan does, however I see your point. I think I big a part of the problem is that I write under a pen name and avatar and you post as "anonymous." There is a tremendous number of donor-conceived children who cannot "come-out" because they risk loosing relationships with family or hurting key people in their lives. Others may not even know the truth as I did not prior to the age of 23 and may feel that odd "something- is-missing" feeling I've described on this blog many times. For this reason, we are not included in studies. We become the unheard majority. This unfortunately is not something the scientific community can control. However I think they need to do a better job of citing this key caveat in their research.

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  10. As has already been pointed out, the numbers of UK sperm donors did not go down after the ending of anonymity. They have actually gone *up* four years in a row since the ending of anonymity, thus reversing a three year decline. The 396 donors in 2008 (the most recent year for which figures are available) was the highest figure since 1996, and 77% more than in 2004 just before anonymity ended.

    http://www.hfea.gov.uk/3411.html

    Despite this, almost every article about the subject assumes there was a drop in numbers, and typically includes terms like "drastic drop" or "crisis". It's just not true. Yes, we could use more donors, but that's always been the case.

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  11. I don't think there is a shortage of third-party sperm, but rather of funds. I have seen 3 people post comments on BBC articles to say that they have contacted clinics to donate, and been turned away for no apparent good reason. Two were told that the clinic already had enough donors, and the third was told he was too old at 37, even though the HFEA age limit is 45. I can't verify any of these, but in 2006, an HFEA spokesman said that Manchester was "an area where supply outstrips demand": http://news.bbc.co.uk/1/hi/england/5054910.stm

    Something doesn't quite make sense here. I suspect that some clinics (and Dr Pacey in particular) are exaggerating the difficulties because they were against the rule changes, and also that some NHS clinics are citing the donor shortage when the real reason is that they don't have enough money to treat everyone. Infertility treatment is very expensive, and the longer they make the waiting list, the more couples pay for treatment at a private clinic, and many lesbian couples will turn to private donors. Some married couples will get pregnant by themselves after two years of trying. That all means less work and more money saved for the NHS. Not very reassuring for a 38 year old woman seeking donor sperm I know, but this seems to be what's going on. Private clinics don't seem to have problems obtaining donor sperm. A couple of years ago, when people were complaining loudest, the London Women's Clinic was advertising that they had over ten thousand vials of the stuff.

    If there really were a shortage, I don't believe it would be a huge problem to fix. You could start off by writing to all male blood donors aged 18-45. They're healthy and altruistic, so presumably the perfect target group. I've been a blood donor for over twenty years though, and while I regularly see flyers for organ donation, bone marrow donation, and platelet donation, I've never once seen anything trying to recruit sperm donors. Importing sperm is another option. It would also be worth considering changing the rules so that the donations of donors who donated over five years ago, and whose genetic children appear healthy could be used for twenty families rather than ten. All donated gametes are destroyed after ten years, but I'll bet there are thousands of vials which are 6-10 years old, which are just going to be destroyed after ten years because of the limit on children per donor. Increasing the number of births per donors, or actually paying donors raises other issues, but why do people keep focussing on anonymity?

    If a lot of donor sperm suddenly became available though, could the clinics handle it, and could the local health authorities pay for it to be used? Probably not, and I think that might be the real story here. I doubt they'd even be able to handle the number of sperm donors suddenly doubling. Maybe this whole thing is all about saving money. There's already been much debate about the "postcode lottery", whereby some couples can get 3 free cycles of IVF promptly, where others have to wait over a year, and may only get one cycle. This is using the husband's sperm, so nothing to do with donation. I just can't help wondering if it's all about the money.

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  12. Thanks Mark for your insightful comments.

    What aspect of outlawing anonymous donation do you think has inspired the growth? Or do you think the growth remains the same and just hasn't been impacted by the legislation?

    Thanks
    Girl Conceived

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  13. The rise in numbers is probably mostly because there have been campaigns to attract more donors, but also because it's been in the news a lot, and seems to be more socially acceptable. There have also been a couple of commercial services (now closed down) which bypassed the clinics, and that generated a lot of publicity at the time. There have also been a lot of newspaper articles about private donors.

    To be honest, I don't think too many clinic donors are really affected by anonymity, and the men who won't donate because they can no longer be anonymous are probably offset by men who are more willing to donate because anonymity has been ended. (the UK went from anonymity being compulsory to banning it; it was never optional)

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  14. Thanks Mark. I would agree. I actually think non-anonymous donation attracts donors of a higher pedigree and level of integrity. Being willing to stand up, admit your identity and be known to your child says a great deal about the type of person you are. There are ample scientific studies that have found we inherit far more than our appearance via DNA. Everything from shyness to anxiety to altruism has been linked to genetic inheritance. For this reason, I would be fearful of being inseminated by someone that required anonymity and was able to completely detach from the act of sperm donation.

    I've always been a loner and someone who seeks solitude. My mother is not like this. Sometimes I wonder if I inherited this characteristic from my sperm donor. It would make sense that a loner and more detached individual would be able to donate.

    Great comment. Looking forward to hearing from you more.

    Best

    Girl Conceived

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  15. Mark
    while increasing the numbers of families may help the donor problem, it does little for the offspring themselves.
    It increases the likelihood of consanguinity, and for those that do know of their conception and the existence of their siblings having 30-40 siblings is too much to form significant relationships.

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  16. I'd prefer to see more donors rather than more children per donor. The limit of ten families seems fairly arbitrary though, and was set at a time when it was assumed that there would always be more than enough donors, and that most donor-conceived people wouldn't know they were donor-conceived, so it was more likely they might unknowingly meet someone with the same genetic father.

    Consanguinity might be icky, but it's not a huge health risk, and it would be unusual for children of half-siblings to have any genetic problems. There is a national register of all people conceived using donor gametes in the UK since 1991 anyway. Donor-conceived people can find out from the register if they are related, or they could probably do it a lot quicker by having a DNA test.

    The concern about donor-conceived people not being able to form meaningful relationships with the donor if they have too many half-siblings seems valid, but no limit could guarantee that, and there are cases of donors having some kind of relationship with over ten of their genetic children.

    The limits seem to be different in every country btw from one in South Korea to guidelines of 25 per population of 850,000 in the USA. http://en.wikipedia.org/wiki/Sperm_donation_laws_by_country#Overview_table

    It's estimated that only about 40% of donor conception births in the USA are actually reported, but there are still donors known to have over one hundred genetic children.

    It's worth noting that in the absence of regulation, it seems that most parents-to-be will choose an anonymous donor, and often prefer donors who already have dozens of genetic children. I'm not saying that's a good thing, but I'd far rather see the numbers of families per donor increased, than a return to donor anonymity, or a genuine shortage of donors.

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  17. Mark
    consanguinity poses more than a health problem in that it is illegal in many countries (USA, UK, Australia). So they could be unwittingly breaking the law. The chances for half sibs having children that are adversely affected health wise is drastically increased if they are recessive carriers of a condition. This is especially pertinent in some ethnic populations. It is also exacerbated by the fact that without knowledge of your familial history you are also denied a health history.
    Voluntary registers such as in the UK are all well in good when you are told of your origins. Data shows that the majority of parents do not tell and do not intend to tell. The UK Donor Link DNA test is flawed and should not be used. Other tests which are better, still need to be paid for by the offspring and can be quite expensive.
    It's not just a matter of the donor having relationships with the children, but between the siblings as well. The relationship debate often centers around the donor/offspring but rarely focuses on offspring/offspring (siblings).
    I do not believe that meeting market demand is a great reason for perhaps inflicting more harm on offspring who may already be suffering (it does not always happen but there are many that I have spoken to that are traumatised by the fact that they may have over 50 sibs).

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