Last Wednesday, we had a brief taste of spring, and several of the moms from preschool took their kids to a local park. We had a brilliant time, the kids got to run off their energy and the moms all shared their snacks and we all agreed to do it again as often as possible. (It turned freezing cold over the weekend so we did a playdate at our house yesterday. Afterward, Wilder threw up his chocolate milk and grapes and then took a nap. He threw up three more times before 11pm. Sigh.)
Also at the park, I had an hour-long conversation with one of the moms about IVF, IUI, and the relative merits of stims when your diagnosis is male-factor infertility. We talked about wand monkeys and sperm analysis and the state of my ovaries. The awkward part? The mom in question is 42 years old, trying for her second child, and swears six ways until Sunday that both her eggs and her (tested last year) FSH levels are good to go. Etiquette and common decency require me not to gasp at any claim by a 42-year old woman that she knows "tons of women who had [non-ART] babies in their mid-forties," and Good Lord, she knows her FSH better than I do. But because the woman in question wanted someone to agree with her that she didn't need stims "because our problem is male-factor, not egg quality," I was hard pressed to know what to say. After an hour, I had pretty much used up my time-tested variations on "well, I'm not an RE" and "I had a different diagnosis so I have no idea" and "It certainly sounds like you're making the best choices for you."
Finally, I lost my head and confessed that I knew of several women in their early forties whose FSH levels took dramatic turns for the worst with no warning (as opposed to, you know, those women whose ovaries sent up warning flares), and hinted that the general consensus in the infertile world would be to act fast whatever she wanted to do. I suggested that if she wanted to do IUI without stims (against the advice of her RE), she should do it soon. I suggested that she could try IUI with stims (as advised by her RE) and call off the insemination if she responded too well for her particular comfort level. I suggested that she was wise to get a second opinion if that's what she wants, but it was my best guess that most other REs would want her to move right along to IVF, and that I heard they did a mean PGD up at Shady Grove. I aplogized six or seven times if I'd overstepped my bounds.
I get approached a lot about ART. I take to heart the advice of other triplet moms that I tread gently when asked, "are they natural?" Sometimes, the answer to "why do you ask?" isn't just stuttering silence as the questioner realizes she's overstepped her bounds. But this is insane. I've now had lengthy conversations about secondary infertility with moms in all but one of the major venues: preschool, Kindermusik, and swimming lessons. (So far, no one has queried my sex life at church.) No doubt it's a reflection of the socio-economic status of the women I meet, because all three SIF moms had their first babies at 38 years old. Probably people "come out" about their infertility to me more than to other women: I doubt the mom in the Kindermusik room whose only child turns out to have been conceived in an FET would have said anything if the SIF mom in the room hadn't raised the topic. I'm glad I don't move through a world where infertility, and especially secondary infertility, is a silent menace. But it does raise some interesting etiquette questions.
Yesterday, the new mom at the preschool talked for rather a long time about how "she wouldn't recommend having your babies so close together" (her daughters are thirteen months apart in age) and I couldn't stop myself from thinking that SIF mom probably didn't need to hear that. It's not my job to educate other women about SIF (my claims to that status being highly dubious) but simply changing the subject felt wrong. How to stand up for my sisters in arms? I have no idea.
Unhappy sidenote: I'm not entirely sure I like being asked about IUI when the question is prefaced by, "I just don't think I could survive having triplets. How did you decide what to do when you were infertile?" I have a fairly complicated answer to that question, and I'm willing to share it, but at some point, how appropriate is it to ask about my responses to triplet motherhood when my kids are tugging on my pants and shrieking for another push on the swings?
Showing posts with label Infertility. Show all posts
Showing posts with label Infertility. Show all posts
Thursday, March 03, 2005
Thursday, January 13, 2005
A Little Statistical Stuff
This has come up from time to time, on a whole variety of blogs (typically as a throw-away line about those wacky triplet folks, so undeserving of their media fame and so unethical with the inappropriate ART protocols--yes, I know I've gone there, too), so let's just get it out of the way: Not every triplet pregnancy resulted from infertility treatment. In fact, something like 1 in 10 triplet pregnancies is a surprise: no fertility treatments were involved. Needless to say, those pregnancies are a special kind of shock for the expectant parents. Imagine finding that out at 20 weeks. Hang out with enough mothers of triplets and you'll find out: it happens. Oof.
Here are some of the numbers: According to various sources, there's one spontaneous triplet pregnancy for every 6,000 to 8,000 pregnancies in this country. John Elliott proposes a ratio of 1 in 6,900 and from that, estimates that there are about 580 spontaneous triplet pregnancies a year. Mothers of SuperTwins reports that fourteen percent of their membership conceived without fertility treatments. Pediatrics published an article claiming that between 1997 and 2000, 17.7% of high-order multiples were conceived spontaneously. The CDC reported that there were 6,737 high-order multiple births in 1997. Even if none of those births were of quads+, John Elliott's estimate of 580 spontaneous triplet pregnancies would be 8% of the total.
How do you conceive spontaneous high-order multiples? Most of the time, you ovulate twice (the same profile as spontaneous fraternal twins), and then one of the embryos divides. A set of identical "twins" plus a fraternal baby is the classic makeup for spontaneous triplets. Far less often, a single embryo divides, and then one of the twins divides again: voila, identical triplets. Also rare, but not unheard of, is the set of three fraternal spontaneous triplets. It's not at all common for a woman to produce three ova in one cycle (most ovaries not high on drugs want to mature only one follicle at a time), but it happens.
When does spontaneous high-order birth happen? Hard to generalize, but it tends to follow the same patterns as spontaneous twinning: in the teenage years, when fertility is at its peak, as well as toward the end of one's reproductive life, when hormonal fluctuations (for the fertile, obviously) can also contribute to multiple ovulation. Spontaneous twinning, of twins or more, also seems to happen to the fertile in the early months of a relationship: the more sex you're having, the more likely you are to conceive during that oddball month when you've happened to ovulate twice.
So really, folks, enough already with the comments about how triplet parents deserve whatever they've got coming. Even if I'm willing to concede the point when it comes to those of us who used drugs (as so many strangers like to phrase it in the aisles of Target or on the streets where we live)--and hey, I think I've written enough conflicted posts about that subject--about ten percent of us didn't do anything more offensive than have sex. Granted, these folks redefine Fertile Myrtle, and that can be pretty offensive, or maybe a better phrase is bitter-making, if you're struggling just to conceive one, but the point is, no, not every triplet you see is an IVF baby. Besides which, every parent of triplets, at some point, loses patience with the way the mere existence of our kids somehow becomes a status-marker for the health and functioning of our sex organs. Please, can we make jokes about the triplets that focus on something else now? Did I mention that when you line them up together in a crib, they try to nurse each other's heads? That's pretty darn amusing, I think.
Here are some of the numbers: According to various sources, there's one spontaneous triplet pregnancy for every 6,000 to 8,000 pregnancies in this country. John Elliott proposes a ratio of 1 in 6,900 and from that, estimates that there are about 580 spontaneous triplet pregnancies a year. Mothers of SuperTwins reports that fourteen percent of their membership conceived without fertility treatments. Pediatrics published an article claiming that between 1997 and 2000, 17.7% of high-order multiples were conceived spontaneously. The CDC reported that there were 6,737 high-order multiple births in 1997. Even if none of those births were of quads+, John Elliott's estimate of 580 spontaneous triplet pregnancies would be 8% of the total.
How do you conceive spontaneous high-order multiples? Most of the time, you ovulate twice (the same profile as spontaneous fraternal twins), and then one of the embryos divides. A set of identical "twins" plus a fraternal baby is the classic makeup for spontaneous triplets. Far less often, a single embryo divides, and then one of the twins divides again: voila, identical triplets. Also rare, but not unheard of, is the set of three fraternal spontaneous triplets. It's not at all common for a woman to produce three ova in one cycle (most ovaries not high on drugs want to mature only one follicle at a time), but it happens.
When does spontaneous high-order birth happen? Hard to generalize, but it tends to follow the same patterns as spontaneous twinning: in the teenage years, when fertility is at its peak, as well as toward the end of one's reproductive life, when hormonal fluctuations (for the fertile, obviously) can also contribute to multiple ovulation. Spontaneous twinning, of twins or more, also seems to happen to the fertile in the early months of a relationship: the more sex you're having, the more likely you are to conceive during that oddball month when you've happened to ovulate twice.
So really, folks, enough already with the comments about how triplet parents deserve whatever they've got coming. Even if I'm willing to concede the point when it comes to those of us who used drugs (as so many strangers like to phrase it in the aisles of Target or on the streets where we live)--and hey, I think I've written enough conflicted posts about that subject--about ten percent of us didn't do anything more offensive than have sex. Granted, these folks redefine Fertile Myrtle, and that can be pretty offensive, or maybe a better phrase is bitter-making, if you're struggling just to conceive one, but the point is, no, not every triplet you see is an IVF baby. Besides which, every parent of triplets, at some point, loses patience with the way the mere existence of our kids somehow becomes a status-marker for the health and functioning of our sex organs. Please, can we make jokes about the triplets that focus on something else now? Did I mention that when you line them up together in a crib, they try to nurse each other's heads? That's pretty darn amusing, I think.
Saturday, November 20, 2004
Oh, Good Lord
So there's a woman on the Triplet Connection who wants to know how many folks there conceived triplets on their first cycle of IVF. She's really asking how many folks safely delivered triplets after their first cycle of IVF, but she's too stupid to get the difference.
No, no, this isn't the line I'm supposed to take. She's under enormous stress, she's not thinking rationally, I'm supposed to be compassionate. But I'm struggling a little because she's only done 3 IUIs with clomid, and now she's decided, on her first IVF, to push for a 3-embryo transfer because anything less would feel like 1/3rd less a chance at getting pregnant.* She wants more than one child, she can't take the stress of ART anymore, and -- after all, she's visited main board on the Triplet Connection, she knows what's involved -- she's comfortable with getting everything done all at once.
You know, back in my RE glory days, the clinic nurses used to do blood draws on Sundays because the hospital lab was closed. So I'd line up with a few other tired-looking souls outside the exam rooms, and of course, we'd be standing in front of those enormous bulletin boards filled with baby pictures and Christmas cards. The brag wall, right? Look what we can do for you! Or, erm, not--because you are, after all, still looking at these photos after all this time. I'd stand there, looking and not looking at those photos, caught in the cliche of hope and despair, and I'd see the occasional photo of triplets. A number of thoughts would run through my head:
It's not pretty to confess this, but during what felt like the longest months of my life (I so did not earn my passport stamp on Infertility Island, which was ironic because after a decade without periods, I definitely arrived carrying supplies), one of the things that got me through was the self-righteousness that came with knowing Calder and I were following the smart protocol. No, I still wasn't pregnant, but that was because I was smart, I was careful, I was in control. I wasn't wanting to put back three embryos, or in our case, trigger with four follicles--not that I ever had to make the decision to walk away from a cycle or my money, I'm such a bitch really to be writing this. Simply stated, I kept myself warm knowing we were Doing The Right Thing.
Of course, that was also the bind. Were we never going to get pregnant because we couldn't agree to cross the Rubicon, pull out the big guns, take some risks or even reserve a seat for the IVF parade? We were already taking a risk or two after all: this wasn't one-embryo blastocyst transfer we were talking about, this was IUI, land of media-adored baby litters and their wacky loving parents. We weren't quite so in control as we liked to pretend. But Calder was really clear: "there are babies in China now, dear," he said. "There's only so much I'll do (or spend, quite frankly) and then I want a baby in this house, not just a big vat of pharmaceuticals in my fridge." Easy for him to say. He had great sperm. Jerk.
Where was I?
Reading this woman's story takes me back to the glory days of my self-righteousness. I sure as hell hope she has a responsible RE, because someone needs to bring her back to the world of reality.
* Counter-intuitive it may be, but I've done some reading on the subject, and there's no medical evidence whatsoever to support the idea that, all things being equal, transferring 3 embryos gets you better odds than a 2-embryo transfer. I'm going to try to pull the citations together one of these days. It's sort of key for this SR article I'm trying to write.
No, no, this isn't the line I'm supposed to take. She's under enormous stress, she's not thinking rationally, I'm supposed to be compassionate. But I'm struggling a little because she's only done 3 IUIs with clomid, and now she's decided, on her first IVF, to push for a 3-embryo transfer because anything less would feel like 1/3rd less a chance at getting pregnant.* She wants more than one child, she can't take the stress of ART anymore, and -- after all, she's visited main board on the Triplet Connection, she knows what's involved -- she's comfortable with getting everything done all at once.
You know, back in my RE glory days, the clinic nurses used to do blood draws on Sundays because the hospital lab was closed. So I'd line up with a few other tired-looking souls outside the exam rooms, and of course, we'd be standing in front of those enormous bulletin boards filled with baby pictures and Christmas cards. The brag wall, right? Look what we can do for you! Or, erm, not--because you are, after all, still looking at these photos after all this time. I'd stand there, looking and not looking at those photos, caught in the cliche of hope and despair, and I'd see the occasional photo of triplets. A number of thoughts would run through my head:
- What a freak show. We can not do that.
- Do they really want to post those photos? Not exactly a rousing endorsement for the clinic's protocols, are they?
- Yeah, I feel just crappy today, but at least I'm not stupid like the parents of those kids. What were they thinking? Didn't they know better?
It's not pretty to confess this, but during what felt like the longest months of my life (I so did not earn my passport stamp on Infertility Island, which was ironic because after a decade without periods, I definitely arrived carrying supplies), one of the things that got me through was the self-righteousness that came with knowing Calder and I were following the smart protocol. No, I still wasn't pregnant, but that was because I was smart, I was careful, I was in control. I wasn't wanting to put back three embryos, or in our case, trigger with four follicles--not that I ever had to make the decision to walk away from a cycle or my money, I'm such a bitch really to be writing this. Simply stated, I kept myself warm knowing we were Doing The Right Thing.
Of course, that was also the bind. Were we never going to get pregnant because we couldn't agree to cross the Rubicon, pull out the big guns, take some risks or even reserve a seat for the IVF parade? We were already taking a risk or two after all: this wasn't one-embryo blastocyst transfer we were talking about, this was IUI, land of media-adored baby litters and their wacky loving parents. We weren't quite so in control as we liked to pretend. But Calder was really clear: "there are babies in China now, dear," he said. "There's only so much I'll do (or spend, quite frankly) and then I want a baby in this house, not just a big vat of pharmaceuticals in my fridge." Easy for him to say. He had great sperm. Jerk.
Where was I?
Reading this woman's story takes me back to the glory days of my self-righteousness. I sure as hell hope she has a responsible RE, because someone needs to bring her back to the world of reality.
* Counter-intuitive it may be, but I've done some reading on the subject, and there's no medical evidence whatsoever to support the idea that, all things being equal, transferring 3 embryos gets you better odds than a 2-embryo transfer. I'm going to try to pull the citations together one of these days. It's sort of key for this SR article I'm trying to write.
Monday, November 01, 2004
A House I Don't Live In
Infertility is a house I don't live in anymore. I packed up my boxes, loaded up the truck, and drove away into the night. I should type, into the morning, but that's not true. I drove away into the night, and it took me a long time to unpack at the new place. It took a long time for the new place to feel like home, and for the sun to come up. Pregnancy and birth and my babies' infancy--they were the dark hours between one house and the next, and I spent a lot (too much) of that time feeling homeless, and lost.
For a long time, the old house--the infertility house--was still home. I moved through the rooms of the new house, the house with a pregnancy and then (even. still.) the house with our babies, but the rooms of the old house still shaped my mind. I woke to bright, harsh mornings and squinted at the world, wondering where the long, golden sunlight of my autumn afternoons had gone, the soft, familiar ticking of the clocks in that house I had known so well. I had grown accustomed to the shape of the infertility house, the familiar path from bedroom to bathroom to bare refrigerator door, and at night, in the dark of the new house, I stumbled against the walls of hallways I didn't know.
Unpacked boxes lay in heaps against the walls of my new house for months and years. They sprang open at unexpected moments, spilled out onto the corners of the dining room floor, and I could never tell whether to throw away the contents, had a hard time untangling myself from the blankets I found inside. I pulled out the photo albums, photos of sorrow and rage and self-pity, and their aura seeped out into the new house so it felt like a place I knew. I looked at those photographs, and they reminded me of myself, when the new self was a stranger who baffled me every day. I held onto those photographs like a talisman, and they kept me company in the dark.
If I dare, in the moments before sleep, I can float back to the nursery we brought our babies home to, the lawn whose shade I tracked so their infant skin wouldn't burn, the kitchen they spattered with sweet potato and tofu. We live in a new house now, the house we hope will carry us to our children's adulthood, a wonderful, light-filled, airy new house, surrounded by more grass and more trees than one family deserves, but a part of our life stayed behind in the precious walls of that old dusty house on its cramped city lot. Infertility is another house I've left behind, a house I have longed for without understanding why, a house that shaped who I was, even after I moved out.
When do memories of old homes lose their power to transport us? When does the ache of remembrance fade into the past? One of the biggest rooms in my old house, my house of infertility, was the room of my broken body. What Julie wrote, about the enormity of desire, about the grief of self-betrayal, I felt that once, I lived in that room. For how many years did I stay there? I half expect to find another one of that room's unopened boxes even now. My body remains unforgiven, and when Julie writes about eagerly embracing medical interventions, I remember: me too. Oh, yes, me too.
And looking at those photographs, going back to that room--of cerclages and wheelchairs and shower stools and fear--what I see more than anything is the grief along the edges, the angry denial of body and self that lurked under those words when they came from my mouth. I wasn't going to allow myself, not for a minute, to pretend I didn't need those interventions. I was going to embrace my modern high-tech motherhood as a badge of conquest, a medal of honor, and damn those silly home-birth mothers for not understanding, not knowing, the shape of the world as it truly was.
Grief will have its time, whether you fight it or not. There was, for me--though I denied it at the time--grief in all those machines, grief in all those technologies, loss and pain and sorrow. Some days, I look at the fading photos of those griefs, and it's as if I can walk right back into them, through the doorways of my mind. And other days, they're just photographs, and I'm glad--so glad--to live someplace else. At last.
For a long time, the old house--the infertility house--was still home. I moved through the rooms of the new house, the house with a pregnancy and then (even. still.) the house with our babies, but the rooms of the old house still shaped my mind. I woke to bright, harsh mornings and squinted at the world, wondering where the long, golden sunlight of my autumn afternoons had gone, the soft, familiar ticking of the clocks in that house I had known so well. I had grown accustomed to the shape of the infertility house, the familiar path from bedroom to bathroom to bare refrigerator door, and at night, in the dark of the new house, I stumbled against the walls of hallways I didn't know.
Unpacked boxes lay in heaps against the walls of my new house for months and years. They sprang open at unexpected moments, spilled out onto the corners of the dining room floor, and I could never tell whether to throw away the contents, had a hard time untangling myself from the blankets I found inside. I pulled out the photo albums, photos of sorrow and rage and self-pity, and their aura seeped out into the new house so it felt like a place I knew. I looked at those photographs, and they reminded me of myself, when the new self was a stranger who baffled me every day. I held onto those photographs like a talisman, and they kept me company in the dark.
If I dare, in the moments before sleep, I can float back to the nursery we brought our babies home to, the lawn whose shade I tracked so their infant skin wouldn't burn, the kitchen they spattered with sweet potato and tofu. We live in a new house now, the house we hope will carry us to our children's adulthood, a wonderful, light-filled, airy new house, surrounded by more grass and more trees than one family deserves, but a part of our life stayed behind in the precious walls of that old dusty house on its cramped city lot. Infertility is another house I've left behind, a house I have longed for without understanding why, a house that shaped who I was, even after I moved out.
When do memories of old homes lose their power to transport us? When does the ache of remembrance fade into the past? One of the biggest rooms in my old house, my house of infertility, was the room of my broken body. What Julie wrote, about the enormity of desire, about the grief of self-betrayal, I felt that once, I lived in that room. For how many years did I stay there? I half expect to find another one of that room's unopened boxes even now. My body remains unforgiven, and when Julie writes about eagerly embracing medical interventions, I remember: me too. Oh, yes, me too.
And looking at those photographs, going back to that room--of cerclages and wheelchairs and shower stools and fear--what I see more than anything is the grief along the edges, the angry denial of body and self that lurked under those words when they came from my mouth. I wasn't going to allow myself, not for a minute, to pretend I didn't need those interventions. I was going to embrace my modern high-tech motherhood as a badge of conquest, a medal of honor, and damn those silly home-birth mothers for not understanding, not knowing, the shape of the world as it truly was.
Grief will have its time, whether you fight it or not. There was, for me--though I denied it at the time--grief in all those machines, grief in all those technologies, loss and pain and sorrow. Some days, I look at the fading photos of those griefs, and it's as if I can walk right back into them, through the doorways of my mind. And other days, they're just photographs, and I'm glad--so glad--to live someplace else. At last.
Thursday, October 21, 2004
Trying not to sound like an Asshole
It's almost impossible to explain how we conceived triplets without implicitly condemning some other people who conceived triplets. Trying to defend our own situation, trying to explain why we don't deserve to be reprimanded or penalized for our conception, I tend to yelp, "hey, we did everything right and we still ended up with triplets." And there it lurks: the implication that other people didn't do everything right. Other people messed up, and those people are bad.
Of course, that idea is claptrap. Hornswaggle. Total BS. Infertility is the ultimate slipperly slope, the definition of mission creep, and with every failed cycle, every miscarriage, every fetal demise and neonatal death, every unimaginable loss and heartbreak, people with infertility have to pick themselves up, examine whatever evidence has presented itself, and make the best decisions they can about their treatment. What's more, they make those decisions in the midst of battle fatigue, and more than a few of them are suffering traumatic stress injuries from the process. So don't like someone's choices? Don't approve of their outcome? Accept that you cannot know the road they had to travel, be humble, and shut up.
And yet. What to say to those foolish, foolish women who post IVF questions on the Triplet Connection? "What road has led you to inquire with interest after the protocols that might allow you, too, to risk total fetal loss, maternal physical breakdown, and the NICU?" What to make of the people being advised on selective reduction who willingly transferred five or six embryos, sometimes on their first cycle of IVF?
I try--not always successfully--to cut these people a lot of slack. No one believes she's going to be in that 3% that conceives HOM. Few of us are capable of hearing that information as we prepare for a cycle. You know how cancer patients are advised to bring a third party with them, so that someone in the room can hear, truly comprehend, what the oncologist is saying? Infertile people--especially, in my experience, the women--need one of those people there, too. Because we do not believe what we hear. And we're too often sitting there in those rooms alone, or accompanied by the one other person just as likely to be deaf to reality as we are (or worse, at war with us over treatment options): our partners.
And, to make matters far worse, our REs encourage us in our willful ignorance. Precisely because HOM are such a shameful result in the ART world, REs downplay the risk. They certainly do not share precise HOM conception statistics for your particular procedure. The best you can hope for are vague generalities, discussions of overall numbers or ballpark figures, a retreat behind the veil of physiological specificity: every situation, every cycle, is unique. How do the REs justify this? I don't know: there's a lot about their ethics I question. My best guess: most REs assume they can "fix" the HOM margin-of-error with SR.
I suspect most REs believe--because they spend so much time figuratively tossing around gametes and embryos--that SR at 12 weeks isn't that much different than embryo selection at 5 days. And most people deciding their next cycle are in one of two places: early enough in the process to believe that everything will go right, and they won't be the ones faced with SR decisions, or late enough in the process that they have to keep moving. Get far enough into infertility and you feel so broken by loss that SR seems like an acceptable alternative to blank despair. God knows, after multiple miscarriages, multiple failed IVFs, multiple mortgage refinancing packages, it gets damn hard not to escalate, to take chances, to implant more embryos than you want to carry, or could carry to term. After so much pain and loss, who can imagine that they could be sucker-punched with the greatest pain: a positive pregnancy test that isn't, in fact, very good medical news.
Every time I hear someone in the store say, "oh, I would loooove to have twins," I have to refrain myself from the lecture. You know the one: the lecture about high-risk pregnancy. The lecture about prematurity. The lecture about how every media portrayal of multiple pregnancy ever has been a lie. I don't give this lecture very often. Face it, in a world where anywhere between 30 and 40% of infertile couples express a positive preference for multiples, I'd be crazy to beat a different drum. Crazy, and arrogant.
Call me arrogant. Here are the facts as I see them:
Still, I must be missing something. Because just last month, I learned that a funny, strong, captivating mother of surviving triplets not only would do it all again, but hopes to conceive triplets again when she goes back for FET. She lost one of her babies to fetal demise at 31+ weeks to complications from pre-eclampsia, one of her surviving triplets almost died from infection in the NICU, and she wants to try again.
I do not get this. I do not get this at all. And it's hard not to think, not to ask, are you out of your mind altogether?
Of course, that idea is claptrap. Hornswaggle. Total BS. Infertility is the ultimate slipperly slope, the definition of mission creep, and with every failed cycle, every miscarriage, every fetal demise and neonatal death, every unimaginable loss and heartbreak, people with infertility have to pick themselves up, examine whatever evidence has presented itself, and make the best decisions they can about their treatment. What's more, they make those decisions in the midst of battle fatigue, and more than a few of them are suffering traumatic stress injuries from the process. So don't like someone's choices? Don't approve of their outcome? Accept that you cannot know the road they had to travel, be humble, and shut up.
And yet. What to say to those foolish, foolish women who post IVF questions on the Triplet Connection? "What road has led you to inquire with interest after the protocols that might allow you, too, to risk total fetal loss, maternal physical breakdown, and the NICU?" What to make of the people being advised on selective reduction who willingly transferred five or six embryos, sometimes on their first cycle of IVF?
I try--not always successfully--to cut these people a lot of slack. No one believes she's going to be in that 3% that conceives HOM. Few of us are capable of hearing that information as we prepare for a cycle. You know how cancer patients are advised to bring a third party with them, so that someone in the room can hear, truly comprehend, what the oncologist is saying? Infertile people--especially, in my experience, the women--need one of those people there, too. Because we do not believe what we hear. And we're too often sitting there in those rooms alone, or accompanied by the one other person just as likely to be deaf to reality as we are (or worse, at war with us over treatment options): our partners.
And, to make matters far worse, our REs encourage us in our willful ignorance. Precisely because HOM are such a shameful result in the ART world, REs downplay the risk. They certainly do not share precise HOM conception statistics for your particular procedure. The best you can hope for are vague generalities, discussions of overall numbers or ballpark figures, a retreat behind the veil of physiological specificity: every situation, every cycle, is unique. How do the REs justify this? I don't know: there's a lot about their ethics I question. My best guess: most REs assume they can "fix" the HOM margin-of-error with SR.
I suspect most REs believe--because they spend so much time figuratively tossing around gametes and embryos--that SR at 12 weeks isn't that much different than embryo selection at 5 days. And most people deciding their next cycle are in one of two places: early enough in the process to believe that everything will go right, and they won't be the ones faced with SR decisions, or late enough in the process that they have to keep moving. Get far enough into infertility and you feel so broken by loss that SR seems like an acceptable alternative to blank despair. God knows, after multiple miscarriages, multiple failed IVFs, multiple mortgage refinancing packages, it gets damn hard not to escalate, to take chances, to implant more embryos than you want to carry, or could carry to term. After so much pain and loss, who can imagine that they could be sucker-punched with the greatest pain: a positive pregnancy test that isn't, in fact, very good medical news.
Every time I hear someone in the store say, "oh, I would loooove to have twins," I have to refrain myself from the lecture. You know the one: the lecture about high-risk pregnancy. The lecture about prematurity. The lecture about how every media portrayal of multiple pregnancy ever has been a lie. I don't give this lecture very often. Face it, in a world where anywhere between 30 and 40% of infertile couples express a positive preference for multiples, I'd be crazy to beat a different drum. Crazy, and arrogant.
Call me arrogant. Here are the facts as I see them:
- The medical profession fails infertile couples when they don't talk honestly about multiples. Multiple pregnancy, even twin pregnancy, is dangerous for mom and dangerous for babies and it's not something you want to embrace until you're faced with it, even to save yourself another $50,000 in IVF costs or because you're looking at rapidly rising FSH numbers or incipient ovarian failure. Want evidence to support the assertion? How about this:
And my babies were big. And they all survived. The real reasons why someone (not me, I mean--someone with authority, a national board of standards for starters) needs to be a voice for conservative treatment are posted at the Center for Loss in Multiple Birth, and the Bereavement Board at the Triplet Connection, and the SR board at INCIID. - Making rational choices about your health and the health of your potential babies is just about impossible in the midst of infertility treatments. When I referred to traumatic stress injury earlier, I wasn't exaggerating. Post-traumatic stress disorder is a documented risk for HOM moms, and there's evidence all over the infertility blogs right now that it's an unexamined risk for all ART survivers. Don't believe me? I dare you to read So Close or a little pregnant or just keep swimming or uncommon misconception and argue that infertility isn't a trauma of the highest order. That all of those women appear to have made wise and thoughtful choices (not all of them the same, or even what I would have chosen: I hope I define wisdom more broadly than that) -- that they made these hard choices in the face of their trauma is proof of rare and blessed human greatness.
- Nevertheless, between RE irresponsibility and Infertile Myrtle irrationality (meant in the very least judgemental use of the term), a lot of crazy choices get made that lead to whole heapfuls of heartbreak, one way or the other. I've seen too much of that heartbreak on the Triplet Connection not to wish things were different.
Still, I must be missing something. Because just last month, I learned that a funny, strong, captivating mother of surviving triplets not only would do it all again, but hopes to conceive triplets again when she goes back for FET. She lost one of her babies to fetal demise at 31+ weeks to complications from pre-eclampsia, one of her surviving triplets almost died from infection in the NICU, and she wants to try again.
I do not get this. I do not get this at all. And it's hard not to think, not to ask, are you out of your mind altogether?
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