Saturday, March 19, 2011

Other family history stuff

In response to my previous post about genealogy, Lut very sensibly pointed out that there's a lot more to the connection to one's genetic progenitors than genealogy. Well, yeah. Good point. I think that when I started the post, I meant to get to that, but I never quite made it there. (Of course it's also possible that I wasn't thinking clearly--I can't actually remember what I was thinking, so this actually seems more likely.) Wanting to know whether you're more closely related to Charlemagne or Genghis Khan (for the record, my money is usually on Genghis) is hardly the most serious issue that a donor-conceived child is likely to face when trying to figure out what their conception means for their identity.

I imagine that many donor-conceived people are much more interested in knowing where they got their eyes/hair/funny big toe/love for anchovies/odd sense of humor, if they have other half-siblings that they don't know about, and if there are any dark medical secrets hidden in the missing half (or halves) of their family tree. Not having this information might be painful, but then again, many people who aren't donor-conceived also don't know these things.

Half-siblings? Any of us could have them. Many closed adoptions probably involve family secrets, so children born in the birth families later may have no idea that they have half-siblings, and of course there's always the fact that none of us know for an absolute fact that our genetic father never sowed any wild oats elsewhere. Obviously the odds of having unknown half-siblings are higher for adopted or donor-conceived people, but they aren't zero for any of us.

As for family medical histories, I think that they sound great on paper, and they have their real advantages, but can be overrated in real life. For example, I admit that it's nice to know that my parents have had three cancers between them-- no, scratch that, it's horrible to know that my parents have had three cancers between them, but given that they have, it's nice to know what they were so I can be on alert. However, there have been all kinds of things that they didn't tell me. I have no idea what two out of four of my grandparents died of, for example, although both died of disease, one of which was long-term and degenerative. So whenever I check that there is no family history of disease X, all that I really mean is that I don't know of anything, not that there's nothing there. When at age 37 I told my mother that I had been diagnosed with endometriosis, one of the first things that came out of her mouth was that her doctors had always thought that she had endometriosis as well. Uh, mom, don't you think that it would have been more helpful to share that information with me before I was approaching the END of my fertile years? It might have changed everything to know about the endo before I was well over 2 years into trying to get pregnant, but she never bothered to mention it. In this case, having false info (the belief that I did NOT have a family history of endometriosis) was undoubtedly worse than simply having no information, since endo is highly heritable, so I thought I probably didn't have it. In fact, knowing that my fertility was under direct threat might have changed any number of decisions from my early 20's on. So, that whole family medical history thing? Not so helpful to date. Obviously my results may not be typical, but based on how non-attentive (translation-non-obsessive) most people seem to be about medical issues, I think that they probably are. So, people without family medical information might imagine that they're missing more than they really are. The reminder of one's origins every time one goes to the doctor's office might actually be the main problem here. Don't misunderstand. I'm not saying that donor-conceived people and adopted people don't have a right to feel upset about not having this info if that's how they feel, I'm just saying that if they are upset, they might be overestimating the actual value of that information for most people that have it (or think they do).

I wonder if the issue of resemblance is really at the heart of people's discomfort with donor-conception. Given how much people enjoy talking about family resemblances, there is obviously something really human about wanting to know where your features came from. This is what I worry about most if we use donor eggs. Eggbert looks almost exactly like Mystery, so I can always hope that we'll get lucky that way again. Given the way that genes tend to shake out in biracial children, I'm cautiously optimistic that regardless of who the child actually resembles, strangers will just look and see "white parent--check!; Mysterious parent--check!" and conclude that the child does actually look like me, even if he or she doesn't. I've noticed that in the USA, people seem to always think that biracial kids more closely resemble the darker-skinned parent. Books could be written about THAT and what it means about the state of race in America, but regardless, that might create enough cover for the child to not have to talk about his or her origins unless he or she actually wanted to. Friends and family members will know the truth, so hopefully they will resist the urge to indulge in much in the way of resemblance talk.

I think that by all of this, I'm really trying to wrestle with a) whether I really think it's OK to deliberately conceive a child who won't have much of a relationship with the source of half of his or her DNA (I do, but just need to reaffirm it to myself from time to time), and more importantly b) how far am I willing to go, and at what cost, to protect the child's right to information to the extent possible. Ideally, I think a known donor (a friend, family member, or compassionate acquaintance) would be best for the child. However, all of my close friends and cousins that I am close with are at least 35, and therefore not good candidates to donate, my sister is older than me (yet she has a one-year-old--is that fair?), and I live in a small town where looking around for a donor would not be easy, and would jeopardize the child's (and our family's) right to privacy. The closest RE is a few hours away in a bigger city, so we could look there if we knew how, but at this moment, I don't (any tips about how I might do that would be VERY much appreciated). When I look at RE info, it seems that most of the donors they recruit are anonymous, which doesn't really help. We had originally thought about going overseas for DE-IVF, since the costs are substantially lower, but it seems that most such programs insist on anonymity.

Sigh. It's all so complicated.

Friday, March 18, 2011

An unbroken chain

Many years ago, while I was still in graduate school, pre-Eggbert, pre-Mystery, a friend of mine asked another if he was planning to have children. His response was "my ancestors for the last 4 billion years have all had children--no way I'm going to be the one to break the chain!" That statement stuck with me, long after that friend got married (to a close friend of mine who had claimed she didn't want to have children), had his two kids (an "oops," and then a second conceived on the first month trying), and drifted out of my life, as happens sometimes.

I have another family friend who is obsessed with genealogy. He's a good guy, but I cannot for the life of me understand why he thinks that non-relatives might be interested in hearing how he found his great-aunt's uncle's father's half-cousin's niece twice removed lives in Odessa, but he does, oh he does!

I myself am interested in lots of different kinds of people and places, and generally am more interested in stories that touch, move, shock, terrify, or otherwise impress me than I am in mundane stories about about family members that I don't know. It has never occurred to me to find out the names of my paternal grandmother or grandfather's siblings, and I've never been particularly interested in genealogy. It seems to me that by the time you get past grandparents, you aren't much more closely genetically related to your relatives than you are to randomly chosen strangers anyway. I have a cousin who keeps a book of information about one branch of the family, but it has never occurred to me to ask to see it.

Mystery's family tree is mostly, well, mysterious. He has a gajillion aunts and uncles, who have a quintillion children, but he doesn't even know the names of two of his grandparents, or any of his great-grandparents, and given the poor record-keeping in the Land of Mystery, he never will. So, Eggbert will know exactly where her Mysterious ancestors came from, but nothing else about them, and as for my side of the family, well, she probably won't even get that.

All of this is an introduction to admitting that for no reason that I can explain, a couple of weeks ago, after seeing a TV commercial (oh the shame!) I clicked on one of those on-line genealogy websites. I made it as far as entering my grandparents' info, and then it turned out I'd have to sign up formally (of course) to see what the place had to offer. There was a free trial, though, and I was about to click on that when I realized that I couldn't. Or shouldn't. Or just wouldn't. Because if I choose to go ahead with donor eggs, that may not be an option available to my child. Of course Eggbert wouldn't make it very far on either, but by asking around in the family, we could probably put together enough information to get her started if genealogy turns out to be one of her "things." But for a donor-conceived child, it would be Mystery's rock on one side, and a hard place on the other. Even if we used a known or identity-release donor, that doesn't guarantee the kind of access to information (birthdates, places of birth, etc.), that would allow a future adult to, at age 42, idly type into a computer and start exploring their family history. Really to me, that doesn't seem like much of a loss at all. When I realized what I was doing, I clicked away, and I can't say that it is really bugging me not to know whatever it is that I might learn if I kept clicking. But it does kind of bug me to realize that many people think that this IS important, illogical as that seems to me. (Edited: When I wrote this, I didn't mean that other people's interest in genealogy bothers me. I meant that it bothered me to realize that a future donor-conceived child might think that this is important and be unable to access their information--sorry if that wasn't clear in the original post.) Beyond pointing out that everyone's family tree can't really lead back to Charlemagne, that even if they did, there is something like a 10% rate of extra-pair paternity in most human societies, so some of those "fathers" on most family trees probably aren't really the fathers at all, and that even if you ARE descended from Charlemagne, that doesn't actually make you special, what can one do to help a donor-conceived or adopted child handle the disconnection that comes from not living with genetic relatives?

I've seen lots of different answers proposed--don't create donor-conceived children in the first place (because somehow adoption creates fewer losses?), be very open (at times to the point of pushing being donor-conceived as a central part of a child's identity), or just relax and follow the child's lead. I don't know. And I also don't know whether it's better that I don't care much about genealogy (so I can lead by example in not being too worked up about genetics), or worse (because it will make it that much harder to relate to a future child's sense of disconnection or loss about being donor-conceived.

And that's if we decide to go for it at all. So much to think about...

(PS--I've decided that I'm going to start just typing and publishing rather than rereading and editing my posts in the interest of making them actually happen. If you notice a radical decline in quality--that's why!)

I just re-read this post and can't stand how disjointed it is. I've edited just a bit, and it's definitely back to routine rereading and editing before posting for me in future posts!

Saturday, March 12, 2011


One of the things that I may or may not have shared about myself is that I can be a bit of a stickler about details. I'm that annoying person that corrects her husband's grammar (hey! he's not a native English speaker, so he thinks of it as helpful, not annoying), edits everything compulsively, and notices, and occasionally comments on, word abuse when it occurs. One of my (many) linguistic pet peeves is the misuse of the word "unique." Webster's defines unique as "Radically distinctive and without equal", as in the only one in the universe quite like this. It does not mean unusual (well, once you get to Websters' fourth definition, it does, but it's hard to take the fourth definition seriously). Being one of a kind is a special thing, and it's a thing that does not involve degrees. One isn't "very unique." One simply is unique or isn't, and that's that.

I have been thinking a lot about uniqueness lately, for many reasons. Until fairly recently, I thought, despite an abundance of evidence to the contrary, that infertility had a basically similar footprint wherever it happened to fall. There seemed to be a fairly standard set of responses--a five stages of infertility grief that everybody dealing with infertility went through to some extent. Obviously the actual circumstances vary from case to case--infertility undoubtedly feels different at 22 than it does at 32 or 42, or when you're single vs. coupled, and different diagnoses can send your emotions in very different directions. Still, it seemed that there were a limited number of paths that infertile people chose, and that these corresponded to a fairly standard set of emotional responses. Obviously this isn't actually true, and I've actually blogged about this before. Still, I was really blown away by what I found when I took a few weeks to read my way through the almost 250 blog posts currently up on Mel's "Creme de la creme" of infertility blog posts for 2010. There were a huge number of posts that spoke to my heart, that I could totally relate to, that I got on an emotional level. These posts included both posts that described events that I have experienced, and also those that went to places that I have never been (and in many cases, that I hope to never go). That didn't really surprise me. I expect to relate to infertility blogs, and often do.

The thing that surprised me was the number of posts that I totally couldn't relate to at all. There were a huge number of different ways in which I couldn't relate to some of the posts, in fact. The one I want to focus on today, though, is posts that spoke of the authors' frustration and disappointment specifically about the fact that they might not have the option of conceiving naturally, even though their chances of conception may have been good, or the authors' determination to buck the odds and conceive naturally. There were enough posts on this theme that I really was forced to admit that this feeling is widespread, and to some extent, assumed to be present. I have touched on this idea before, but have never really fully grasped the extent to which conceiving the "old-fashioned way," without chemical or surgical help, is important to some people. And, conversely, the extent to which it is of little or no importance to me. For me, infertility was a problem not because it made "natural" conception impossible, but rather because the treatments that might enable me to overcome this problem were prohibitively expensive, uncomfortable, and came with no guarantee of success. From the moment that I first started to expect that something was wrong, I was terrified that I'd never have a child at all, not that I wouldn't conceive naturally. If in my 12th month of trying to conceive, someone had given me the option of trading in all hope of a natural conception for guaranteed success as many times as I wanted with free IVF cycles, I'm pretty sure I would have leaped at the chance. I am still digesting the fact that this doesn't seem to be true for everyone. It explains a lot, though.

Now I wonder if the fact that some (or is it most?) people place such a high value on "natural" conception is responsible for the amnesia that some infertile people seem to experience following successful treatments. Is it a way of distancing themselves from something that they feel embarrassed about or ashamed of? Is that why the comments after any newspaper or magazine article related to assisted conception are so hateful? Is that why some women dealing with male factor infertility take such care to point out that there is nothing wrong with them that necessitated fertility treatments? Is it why so many people drag their feet about seeking treatment or even diagnosis? Why some people give credit to the moonlight rather than the clomid when they do actually conceive?

If so, I don't get it. What is so special about the process of ejaculation in a vagina at exactly the right moment that somehow makes it intrinsically (as opposed to financially or logistically) more valuable than a little magic in an embryology lab? If conception is a miracle, how much more miraculous a conception that was richly desired and earned with great difficulty?

I'm interested in these questions in part because as I consider using donor eggs, I am trying to identify exactly what losses, if any, Mystery, I, and any child that might result, may feel as a result of our choices. I love it that I conceived Eggbert via IVF. I don't love it that I needed IVF, but I'm proud of the fact that I found a way to make it happen--to make Eggbert happen. It wasn't easy. It wasn't fun. But I did it, and I feel great about that. But if natural conception is widely considered to be better than assisted conception, then what does that mean for Eggbert's feelings, and for the feelings of any other child that may come along? And then when donor conception is added into the mix, what does that mean? Is there any chance that a donor-conceived child might feel an additional element of loss (beyond the loss of a genetic connection with me and the loss of a mother-child relationship with the donor) as a result of being conceived in a non-traditional way? Is there any chance that Eggbert might sad or embarrassed about the circumstances of her conception too? To be honest, these thoughts had never even occurred to me before reading those posts. But forewarned is forearmed. I think I'm going to start adding in the story of Eggbert's conception to her birth story (which I tell her every year on her birthday), so she knows how special the whole story is to me. I hope that some day, she will see it as a special thing too.

An afterthought: I just re-read an earlier post (linked above) that I wrote about processing infertility, and it seems that my feelings have really gone full circle in a way that I hadn't appreciated until I read both posts again. There was a time when I grieved the loss of natural conception, and then I stopped grieving it, and now I can barely even remember ever having felt that way. That must be progress.