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Sunday, March 2, 2008

Barren B*tches Book Brigade: "Embryo Culture"

It's time for another selection from the Barren B*tches Book Brigade, brought to you by Stirrup Queens & Sperm Palace Jesters. The way the this online book club works is people sign up, read the book (usually, but not always, related to infertility and pregnancy loss), & submit a question. Lists of questions are distributed among the participants, and we pick at least three to answer in our blog, then visit each other's blogs to comment.

This month's selection was "Embryo Culture" by Beth Kohl, which intertwines the author's own infertility journey with an investigation of various aspects of infertility, ARTs and the ethical dilemmas she encountered along the way. This book had been in my "to read" pile for awhile, so I was happy to be prodded into digging it out & finally reading it! There was a lot that Beth & her husband encountered that was familiar to me, and a lot that was thought-provoking.

On to some of the questions...

The author describes her journey through infertility both in terms of a faith journey and a process of scientific discovery. How has infertility impacted your faith journey and your views of science/technology?

Re: my faith journey... my dh & I had already started attending church again, in anticipation of starting a family, when I finally got pregnant. Although we were & are not overly "religious," we wanted our children to be baptized, go to Sunday school, and learn something about God and the Bible. Our faith, our church and especially the assistant curate at our parish, who handled the funeral service for us, were of great comfort to us in the days after our daughter's stillbirth.

Gradually, however, it became harder & harder for us to attend services. Our church has a large number of young families attending, and the children often participate in the services. Singing the hymns I remembered singing from my own childhood, while watching other people's children filing up the aisle from Sunday school, often had me choking back tears. Baptism days never seemed to be announced in advance, & we actually left by the back door one day when it seemed just too hard to stay. Seeing women who had been pregnant at the same time I was bring their new babies to church -- and then get pregnant again, and again, while my arms remained empty -- was particularly painful, as were the many references to "barren" women in the Bible (Elizabeth, Hannah, etc.) who were eventually "blessed" with children. Mother's Day services, when the minister would ask all the mothers & grandmothers to stand up, were excruciating. Should I stand (even though we had no children that anyone could see)? Should I sit (and deny my daughter's brief existence)? One year, I was surprised when the prayers included a request for healing for mothers who had lost children, and women who wanted children but were unable to have them. It was a nice gesture, but overall, it was still a hard day, and we gradually stopped attending services regularly. My faith in God remains, but my faith in organized religion has diminished considerably.

Re: science... it's true, science can do amazing things these days. At the same time, my own journey through loss & infertility has left me realizing that science has its limits. I naively believed that science could resolve the problems that emerged during my pregnancy. As we progressed further and further along, I came to realize just how little doctors really know about how women get & stay pregnant, and how much is really just a guessing game. It was a real wake up call for both my husband & me.

From early in the book, it is clear that the author ends up with a take-home baby. How do you think this affects her perspective on infertility and how did affect your perception of the book?

I'm not sure about her perspective, but I can tell you about mine. First of all, I acknowledge the total futility of what Melissa at Stirrup Queens calls "the Pain Olympics." It's something we stress at our support group meetings: "everyone's loss is significant, regardless of gestation or circumstances." Whether you had a 7-week miscarriage or lost a baby in the NICU, it hurts, and your pain deserves to be acknowledged. Likewise, everyone who's lived with infertility has been through the wringer, whether you did a couple rounds of Clomid or seven IVFs, whether you had losses along the way or not, whether you brought home a real live baby or not, whether you chose to adopt or not... no matter how you slice it, we've all been dealt crappy hands to play with.

And yet... looking at the photo on the book jacket of a blond woman with three beautiful, smiling little girls, I didn't even have to read a word before I knew the author had succeeded in her quest to start a family. The green-eyed monster within me stirred. And when I started reading, I'll admit, the breezy tone put me off a little. She spent so much time describing her first IVF, and seemed so sure it was going to work, she had me convinced too. And when it didn't, I was surprised and a little ashamed of myself. And then when I read the parts about her daughter's illness, and about being on hospital bedrest with her twins, I felt thoroughly ashamed of myself. The woman did earn her infertility stripes. (Beth, if you are reading this, my apologies.) But is it really rotten of me to say that knowing that she struggled beyond her initial diagnosis, and experienced failure along the way, made her a more credible and sympathetic narrator in my eyes?

The author talks about whether there should be an age limit on who should be able to go through IVF. Should there be an age limit?

On the one hand, I get POd when I hear about clinics that impose age limits of 42 or 40 (or even younger). Some say it's because the chances of success when you're older are so rare anyway -- but I'm more inclined to think it's so as not to mess with their precious success statistics.

But when I hear about women in their 50s and 60s getting pregnant, it does give me pause. My mother had me when she was barely 20 (my younger sister & I had both left home for university before she even turned 40) -- and while I'm not sure that's an ideal situation either, there has to be a happy medium. My great-grandmother was the same age I am now -- 47 -- when she had her sixth and last child (six years after #5). (This was in the 1920s -- obviously, no fertility treatments then!) My grandmother was the same age I am now when I was born.

While I don't feel old enough to be a grandmother (!), I'm not sure I'm young enough to be a mother anymore either. I don't necessarily feel ancient, but I realize I am not young anymore either (especially after a day at the office where I seem to be surrounded by 20-somethings). I can't imagine being up nights with a crying baby or chasing after a toddler at this stage of my life -- which is one reason why we called it quits when I was 40 & dh was 44. I also can't imagine that even the most healthy 60 year old would be in the same shape to withstand a pregnancy that an equally healthy 30 year old would be. I hate to say I am "for" limits, but I do think there's a reason why our bodies are designed with a natural time limit for pregnancy -- and while there is some flexibility & room for pushing the boundaries with ARTs, we do need to use a little common sense.

We also have to think about the children of older parents. How long will their parents be around for them? Will they be helping pick out nursing homes at the same time they're finishing college? I remember my schoolmates always loved my mother, because she was so much younger & "hipper" than their own parents. On the flip side, my great-aunt -- the baby born to my great-grandmother when she was 47 (and my great-grandfather was 56) -- was always a little embarrassed about her birth story. Being a small town, she once said she always felt like that's all anyone ever remembered about her. Her father died when he was 71 and she was only 14.

The author also talks about how many embryos should be transferred at any given cycle. Should there be a limit?

I can remember, at one of my IUIs, the doctor said there were four good follicles in there. He had mentioned the possibility of multiples when we first started seeing him, but not in any great detail. Driving away from his office after the IUI, it hit me that I could quite possibly become pregnant with QUADRUPLETS if all four eggs fertilized. And I started to cry, because it scared the crap out of me. I always thought I could cope with twins, & that they might even be kind of fun (my sister & I, although 21 months apart, were often mistaken for twins when we were growing up, and they've always fascinated me) -- but triplets or more? eeek

Of course, we wound up with nothing out of that cycle, but it was a possibility, and I was a nervous wreck during the 2ww. Dh's cousin's pregnancy (rumoured to be from IVF, or perhaps IUI) actually started out with four sacs. One sac disappeared, and then she lost one of the babies at Christmastime before delivering two boys in mid-February, slightly premature, who spent two weeks in the NICU before coming home. (They are now healthy six-year-olds.)

I understand people want to maximize their chances of success, particularly as they get older and the clock is ticking. And, as Beth said in the book, when you are spending so much money and going through so much rigamorole to get pregnant, the idea of multiples -- "instant family" -- is tempting.

But I have also read enough about the risks of being pregnant with multiples -- for both mom & babies -- and heard enough stories from clients of our pregnancy loss support group -- that I do support limits. Maybe not one egg only, but two or maybe three, tops. You might think you could cope (mentally, physically, emotionally) with a triplet or quadruplet pregnancy or more (not to mention three or more real live babies to take care of afterwards, assuming the pregnancy is a success) -- and perhaps you could -- but it's an awful thing to find out otherwise.

The author mentions that going through infertility and IVF made her think differently with abortion? Has this changed anyone's position on abortion or did IVF change the way you thought about it?

I was, and am still, very much pro-choice. I would never presume to tell another woman what she should do with her body, and I wouldn't want anyone trying to control mine either. I believe abortion will always be with us, and so it should be legal and safe. I don't like the idea of using abortion as the solution to an "inconvenient" pregnancy, but at the same time, I have met many couples (online & in real life) who terminated pregnancies where the babies had problems that were incompatible with life, or at least life of any sort of quality. I know the struggle they went through to reach that decision, and the guilt they carry afterward. I can't imagine telling a woman in this situation that she must carry that child to term or until it dies in-utero.

At the same time, pregnancy, loss and infertility have given me a new perspective on these matters. I can completely understand someone being possessive about their frozen embryos, as Beth was in the book. I can understand feeling attached to an embryo in a petri dish. Too many people will dismiss pregnancy loss as "just a miscarriage" or "just a blob of tissue." Some women can dust themselves off after a miscarriage & continue on without it affecting them too deeply (at least, to look at them on the surface). But if you feel that you lost a baby, even if you just peed on the stick two days ago and your period started today, people should respect your feelings, even if that's not what they themselves believe.

Our pregnancy loss group has another saying -- it's not the gestation, or length of time you carried the baby, it's the attachment you feel to it that counts. Little girls have always dreamed of being mothers -- but these days, thanks to science, we don't have to wait nine months to "meet" our babies, or to have the baby placed in our arms before we begin to "bond" with him or her. We can look at follicles or a fetus in an ultrasound, embryos in a petri dish, find out if it's a boy or girl in advance and give the baby a name. Add to that the huge investment -- financial, emotional, physical, timewise -- that people with infertility have made in each attempt at pregnancy. All these things play a part in the "bonding" process, long before a child is actually born. Assuming he or she IS born. Which is why I believe there is no such thing as "just" a miscarriage.

I know many people think of abortion in black and white terms -- but if anything, infertility & pregnancy loss, our work with our pregnancy loss support group, and all the reading I've done over the past 10 years, in books and online, has only reinforced to me that every situation is different, and there are many, many shades of grey.

Beth Kohl discusses her fears about how IVF may lead to increased health problems for her children, and she thinks about this in the context of her daughter's surgeries for cysts on her bladder. Do you ever worry that IVF or other ART could compromise the health of your children created through the process? How has that affected your decision to pursue treatment?

This was not something that I knew or thought much about while we were in treatment -- but I have read a little about it since then, and it is something that I wonder about. These are still relatively new technologies, and there is still so much we do not know about them and how they are going to affect our children, 10, 20, 50 years down the road.

At one point, Beth fixates on a typo on a RE clinic's website and decides, "one picayune omission but enough to confirm I'll have to seek my progeny elsewhere. When dealing with things microscopic - egg nuclei and isolated sperm - there can be no margin for error." Has there ever been something "picayune" that has swayed your decision or direction on your path to parenthood? What was it that made that something seem significant?

I can't think of a "picayune" example from my own story at the moment. However, I remember reading that sentence & laughing out loud. As an English major with a subsequent journalism degree who works with words for a living, typos drive me up the wall. I'm willing to overlook the odd one in blogs & online posts, since you're pounding things out on a keyboard quickly & not really paying attention to proofreading (there are probably half a dozen in this post alone), but I think they're inexcusable in advertisements and the like, from writers who are paid to be professionals. I have often seen an ad with a glaring typo and said, "Well, I'm never shopping there!" (The thing that REALLY drives me up the wall is that most of these are not really "typos" -- inadvertent errors made in haste as you stumble over the keyboard -- it's that too many people these days don't even realize they've made an error -- mixing up "their" and "there," for example. But that's another rant for another day...!)

Throughout the book, Beth references different ways of how religion plays into her thoughts and some people's beliefs on infertility. I, for one, did not think of religion and God too much as far as my decisions of how far to take ART but I know people understandable do. However, as I do believe in God though not very religious, I often thought my infertility was a punishment handed to me by the higher powers. Even though the issue is MFIF, I felt as though I was the one being punished because of some things I had done in my earlier years. Beth talks of the possibly of this punishment in the last paragraph on page 49: "Or is He a puritanical smiter, my infertility a pox upon me . . ." My question is: have you thought in terms of your infertility as a punishment, some divine destiny that you should maybe not try to change, or not? And why or why not? And how did/does it affect your decisions? As I would probably not give specifics, I am not meaning for you to, but I felt much comfort knowing I was not the only one who questioned if it was a punishment and am curious as to how other people have related religion and punishment to their IF journey.

I think it's very common to feel this way, and I know I certainly had some of the same feelings and questions. One book that I found hugely helpful in resolving my feelings on this issue (which I have recommended to a lot of people) is "When Bad Things Happen to Good People" by Harold Kushner. After reading it, I decided that the God I believed in was a loving God who wept along with me & embraced me when our baby girl was stillborn -- not one who was "punishing" me through my innocent child for some undetermined "sin" in my past.

Beth makes certain that she tracks how she and her husband respond to infertility in different ways - through diagnosis, debates about treatment, and how infertility is perceived in the "normal" world. Do you find such differences between yourself and your significant other(s)? Was it difficult to determine upon a course of treatment due to those differences?

I was always the one pushing forward with treatment, which I don't think is unusual, from what I've heard and read. I was the one who thought we should look into some testing (in case the problem was something simple that could be easily "fixed"). I was the one who wanted to see the RE our ob-gyn referred us to. I was the one who wanted to proceed with injectable drugs when it became apparent the clomid wasn't doing anything for me. I was the one who suggested counselling & booked our appointments, when we couldn't seem to get on the same page as to how far we were going to pursue this thing and, later, whether it was time to call it quits. For most of the time, my dh took the stance that I was the one who was going to have to go through this, physically, so it was mostly up to me. But he certainly had a stake in it too -- financially, emotionally, plus he accompanied me to the clinic just about every morning.

With the infertility counsellor's help, we agreed to try three IUI cycles with injectable drugs, and then re-evaluate. In his mind, that would be the end of it. In my mind, perhaps we would move on to try IVF... because it was the next logical step and -- as George Mallory famously said, when asked why he wanted to try climbing Mount Everest in the 1920s -- "because it is there."

In the end, we never did try IVF (and Mallory disappeared into the mists of Everest -- his body was discovered years later). All factors considered, we knew the odds were good it would not work. The financial considerations, while not a deal-breaker, were nevertheless a factor. Most of all, dh could see the physical, emotional and mental toll it was taking on me. And so, this time, his opinion prevailed, and we have remained a family of two.

Hop along to another stop on this blog tour by visiting the main list at http://stirrup-queens.blogspot.com/. You can also sign up for the next book on this online book club: The Mistress's Daughter by A.M. Homes (with author participation!)

11 comments:

  1. Yes - you are indeed a writer! I remember discussing typos and grammatical mishaps via email with you in the past. Reading your comments and remembering made me giggle a bit.

    Ah yes - the who's pain is more debate. I never could understand that one. Pain is not quantifiable - so I always took the stance "You hurt? Okay - that's good enough for me. I'm sorry - how can I help?" You and Ann were always very good at pointing out that attachment figures in as well as the amount of time a person put in before they experienced their loss. I never felt dismissed by you because I "just" had a miscarriage (or 7) - even though I could never imagine a "bigger" pain than Katie's stillbirth. Validation of the fact that I had lost something very precious to me was HUGE in the healing process - as I think it would be for anyone.

    Infertility and loss are certainly eyeopeners in the pro-life/pro-choice arena. I agree with you - it is not simple black and white. As a person who had to sign papers to terminate a much wanted pg - albeit a doomed pg and one threatening my life as well - I can appreciate the distinction and various shades of grey. I really wish they would change some of the terminology. I have hated so much having the term "habitual aborter" inked in my medical file.

    I think I am going to need to read this book. Certainly I have found much food for thought in your post and enjoyed reading your thoughts.

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  2. Thanks for sharing your thoughts! I agree with the limit issue. It seems a bit too much of a risk in the long run.

    I also liked "When Bad Things Happen to Good People". It helped me through a really tough time when I was younger.

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  3. Just wanted to write that I enjoyed reading your answers. For me, the typo thing really hit home. As a lawyer and dealing with real estate marketing, language is so important. I've never understood why people cannot just take the time to hit the spell check button. :)

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  4. I had to take a pass on this book tour. I'd read one too many infertility books that ended with a baby. This one ended with three and then the author had (what seemed to me the gall) to start raising all sorts of questions after the fact about the the system that helped her get her children (covered by insurance mind you) ... just struck me as a tad hypocritical.

    As for your experience with church services, I stopped going for the same reason. I also remain firmly pro-choice. While IVF gave me a greater appreciation of the biological process, no one should have control over another woman's body.

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  5. Loved reading your comments. Totally agree with you on the limits on age and embryos. And I liked your response about abortion.

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  6. I hear you with the writing after infertility thing (says the woman with children after treatments...)--I wonder if it's also a visual thing. If there is something so mindful when you see a picture of the children vs. reading about them from time to time.

    It's funny--I took the jacket off the book months ago so I didn't remember that picture.

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  7. Great comments. I'll put this book on my reading list.

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  8. Great comments Loribeth. "when bad things happen to good people" was an absolutely pivotal book in my faith life, years before the IF struggle. I read it again when going through IF, and was amazed to realize how many ideas in that book came to be part of my beliefs.

    I also really appreciate your views on the "pain olympics."

    Andie

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  9. I haven't read this book, but in your answers to the questions, I was struck as I so often am by the compassion and wisdom in your responses. You have been through one of the worst things imaginable with the loss of Katie. You would have every right to be bitter but aren't. Thank you for the inspiration.

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  10. Thank you for your always insightful responses. I know we aren't supposed to compare our pain, but sometimes I just read a person's story, and I can't help but feel that they just rate so much higher than me in the pain department.

    It's funny how although I was successful with treatments, I am the first person to explain that IVF, or any IF treatment is a total crapshoot. People seem to have the misconception that if you can't get pregnant the old fashioned way, you just do IVF and then you'll have a baby. Throughout the entire process for us, everyone was so positive and saying how it would work, and I was well informed enough to know that that is not at all how it works. There is so much that the doctors can do, and for that I am thankful, but like you said, there is SO much they can't control.

    I totatlly understand why going to church is a hard place for you. The whole journey made me question my faith as well, more than I ever had before. And I think a lot of people may be surprised to find that although it worked, I didn't find my faith through it. It actually helped me come to the conclusion that religion doesn't really have a place in my life.

    Thank you for your honestly. I always enjoy reading your responses!

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  11. I really enjoyed reading your responses (particularly to the questions I posed on age limits, embryo transfer limits, and abortion). Thank you for taking the time to write your answers.

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