Monday, December 27, 2004
I have one vivid Santa memory from my childhood. We celebrated Christmas Eve at my grandparents' house (as all good Norwegian-Americans know, presents are opened on Christmas Eve) and one year, when I was six I think, Santa made an appearance. He knocked on the door, breezed into the living room, said some ho-ho-ho's, and left. Did he bring a present? He must have, but I cannot for the life of me remember it. I've been realizing all week that I don't have clear memories of any of my childhood Christmas presents. I do, however, have vivid memories of the presents I kept requesting, but never received, and of the toys my siblings received that were clearly many degrees nicer than the presents I was given. Make of that what you will.
That Santa existed was not in doubt. He came to Grampa's house, after all. I met him in the flesh. And I was completely enthralled by the entire event.
A few years later, I found the Santa suit and a cheap, flimsy white beard at the bottom of my mom's hope chest in our living room. By then, I knew Santa hadn't visited us, I knew Santa was pretend, but I was still surprised. "Ah ha," I thought, "that's what it was." My eight- or nine-year-old self was surprised that the beard had taken my younger self in. But if there was a devastating moment of loss--over lies or lost innocence or any of the usual Santa demons--I don't remember it. Doesn't mean I didn't feel it, but on the other hand, I came early to my intense enjoyment of nostalgia. It's entirely possible that my first reaction was the one that stays with me: "Wasn't that wonderful, way back then."
As a Christian, I have no problem letting Jesus share the holiday with Santa. Santa gets mentioned once a year, admittedly for a longer and longer stretch of time as the years pass, but he's contained. Jesus is ever-present and ever-important. Santa isn't in the Bible. Jesus is. (As an aside, I have more anxiety about my children building an altar, drenching it in water, and then wondering why their prayers don't bring down fire than about their questions regarding Santa Claus. They simply adore their Beginner's Bibles, and those stories about miraculous deeds worry me--I can barely explain to myself why God doesn't seem to do those things anymore, let alone offer reasons in the language of preschoolers.) Santa brings small presents that fit into stockings, and maybe something small that doesn't fit into a stocking. Jesus brings eternal life, beautiful hymns sung in candlelit churches, and the chance to perform the Christmas story in front of a crowd of adoring adults.
I was raised in the sort of Scandinavian-American household in which lutefisk, lefse, and the Tomten made predictable appearances. I respect that Santa Claus has origins in Saint Nicholas, but in my experience, he's closer in spirit and purpose to the Nordic tomte and nisse, or the Celtic faeries and sprites. I don't have any problem being a Christian and remembering that this is also the season of Yuletide. My ancestors spent thousands of years believing in folk not that different from Santa, and frankly, I'm not prepared to say they were wrong. They saw tomte and trolls in the forest; Elijah called fire down upon water-logged wood. The world used to be a far more magical place, I think.
Besides, I would never, ever, ever use the "Better be good or Santa won't bring presents" line. I find that offensive. Santa gives gifts at Christmas because Christmas is the day God gave us his greatest gift, the gift of Jesus the Christ. Jesus is love, and we show our love in giving. True gifts don't come with strings. That parent who "took away" Christmas by listing his sons' promised presents on eBay? If God had followed that sort of logic, we'd all still be condemned. The entire point of Christmas is that God's love comes through grace, in fulfillment of the Promise, not when we deserve it but precisely because we do not.
Indeed, Santa can be the most gracious giver to children at Christmas, because he doesn't stick around asking for thanks. He doesn't peer intently into your eyes as you open his presents, and then ask if you like the color or not. A week later, when you've dragged your feet about cleaning up the toys, you don't look up at Santa and wonder if you really deserve his largesse. Santa gives secretly, without ties of obligation or expectation. I find that a really wonderful idea. No wonder kids adore Santa Claus, even when their parents do enlist Santa in the language of bribes.
We had three encounters with Santa this year, and two of them were delightful. The mall Santa, accompanied by a woman who asked us to call her "Grandma," was a bit of a lump. Nice beard, authenticly "tasteful" faux-Victorian surroundings, but not worth much of our time. The Grandma thing irritated me. If you're going to be a mall Santa, you should at least preserve the illusion, I think. Mrs. Claus is no one's Grandma that I've heard of. Anyway, we have another Santa photo of the five of us, a crappy digital print with a truly ugly border, me in no makeup because I thought the kids were old enough to do the photo alone, and that's that.
But the other two Santa encounters? Lovely. The first was one of those magic moments: the day before Thanksgiving, we saw a man in a red flannel shirt and red Santa hat, complete with appropriate build and beard, shopping in our grocery store. The kids were not contained in the cart that day, and they stalked this man through the store, giggling uncontrollably and whispering fiercely, "Santa, Mommy, SANTA!" I didn't have the courage to lead my children up to this mysterious stranger--even though I'm sure it's only what he could have expected, you don't go out in that type of garb at the holidays and expect to pass incognito. Still, I'm shy, and I'm always self-conscious about being out with a brood of children who might start whining any minute, so we admired from a distance. We hid behind endcap displays and stared. The children giggled so hard, I thought they were going to break something, and I smiled so broadly at their excitement, my cheeks ached the rest of the afternoon.
The second encounter came at the Santa Train at our local children's museum. The train stopped up in the night-darkened woods near a brightly lit cabin, Santa walked down the train speaking to every child, and he offered innocuous but in-character compliments such as "You were only this high last year when I saw you!" "I can't wait to see you at your house." And the clearly-essential one, "What do you want for Christmas this year?" Because I didn't realize how young children are when they start to read their parents and react accordingly, and my children at least have already started saying things like "What do you want me to ask for, Gramma?" (No kidding, Gemma carted that one out with my mom last weekend, which I call wildy insightful, and pretty much the definitive summing-up of everything my mother is about.) With Santa, you can let your guard down and ask for the flimsy plastic trumpet you are already old enough at almost-four to know your parents think is trash. And your parents, in the guise of Santa Claus, can give it to you.
What will I say when someone asks The Question? Does Santa Claus exist? Well, what do you think? Do you want to talk about Saint Nicholas? About fairy tales and legends, about Beowulf and Thor and the Three Billy Goats Gruff? What about the Tomten? Charles Dickens? Clement Moore? For now, I can be charmed by the girls whispering together on Christmas morning, "Santa brought us three little presents! And one BIG present! And there are candy canes in the stocking!" Elba can pray on December 26th for Santa to get a good night's rest. And Wilder can announce on Christmas morning, "You're Santa Claus, Mommy" and I can get all flustered and say "What makes you think that?" (openly, not accusingly) and Wilder can already have decided it's more interesting to play with his new toys.
Monday, December 13, 2004
A couple whose husband posts on the Triplet Connection lost their babies late last week. The wife started experiencing complications at around 18 weeks, and she progressed into active labor at 23 weeks. I don't know if any of the babies were stillborn, but the last baby died after a couple of days in the NICU. The father had wanted to do selective reduction, and posted at the Triplet Connection 14 weeks ago, asking for help. All three babies were identical (No, I don't know how they knew this) and the parents had been told SR carried too high a risk of total pregnancy loss. I know you'll be shocked to hear it, but I'm one of the few people on the TC who tries to present a balanced view of SR when people ask about it there. I sent the father links to a few articles about the use of SR in high-risk MoMo twin pregnancies, just in case there was some chance their original anti-SR diagnosis was wrong. We corresponded privately, and I wished him well when they decided to go forward with the triplet pregnancy.
In light of their loss, my judgementalism about SR seems grossly out of place. Who am I to judge someone else's tolerance for risk? What I would like to do is provide factually accurate data about the risks: something I think neither the HOM nor the SR communities do very well as a whole. Be warned: my fact-heavy revision mutated this post into something far from fast-and-dirty. If your idea of a fun read isn't a heavily-annotated guide to multifetal reduction, now is the time to jump ship. Can I recommend dropping by Julie's place to read the latest updates on Charlie?
First, Cricket asked a very smart question, which I will paraphrase: if people pregnant with quads or more will find good medical evidence in support of SR to twins, why shouldn't triplet pregnancies also be reduced? The short answer is: diminishing returns. SR carries a measurable risk of total pregnancy loss. Depending on who does the procedure and what placental layout you're working with, the risk varies from 3-5% at a good facility with highly-experienced doctors to as high as 30% at other places.1
In an October 2004 article in the Journal of Maternal-Fetal and Neonatal Medicine, "Embryo reduction versus expectant management in triplet pregnancies," the authors concluded that "In triplet pregnancies, embryo reduction to twins significantly reduces the risk of severe preterm delivery and very low birth weight by about one-third, at the expense of a significant increase in total fetal loss, by about one-quarter. The procedure is likely to reduce the risk of having a severely handicapped child due to extreme prematurity." (The severe handicap numbers they quoted were 0.63% for the reduced group versus 1.64% for the non-reduced group.) This was a retrospective study, not ideal for clinical findings, but typical for IVF/HOM research. There were 255 trichorionic pregnancies examined; 185 were reduced, 70 were managed expectantly. The most provokative discovery? 15.41% of reduced pregnancies resulted in total fetal loss versus 4.76% in the non-reduced pregnancies. Most of the disparity arose from the miscarriage rate: 8.11% in the reduced group versus 4.76% in the nonreduced group.
Setting aside the risk of miscarriage, another recent study found that 35% of placental environments after SR showed chronic inflammation.2 This helps to explain why SR, even when it improves the outcome of the pregnancy, doesn't lead to outcomes exactly the same as originally-occuring pregnancies with the same number of fetuses. In other words, an SR twin pregnancy will not, on average, do as well as a twin pregnancy that didn't become one through reduction. To quote numbers, in the USA, the average quad pregnancy lasts 30 weeks; the average triplet pregnancy lasts 33 weeks; the average twin-SR pregnancy lasts somewhere between 34 and 36 weeks (I keep finding new studies, and the numbers fall all over that range); and the average twin pregnancy lasts 36 weeks.3 Getting from 30 weeks to 34+ weeks offers a reasonable jump in overall outcomes, including those involving maternal health, but the jump from 33 weeks to 34+ weeks is, on average, fairly small.4
It's worth mentioning at this point that 95% of 30-week babies survive, and that 95% of the survivors will suffer no major disabilities. (I get my statistics for this from one of the best premature-baby medical sites on the web, that of the University of Wisconsin Pediatrics Department.) Of course, the average woman carrying quads will have experienced many more complications, and endured many more interventions, than the average woman carrying twins.
Now for the problem faced by that couple I mentioned at the beginning: the problem of total pregnancy loss. We simply do not know how many pregnancies begin as HOM but end with two heartbroken parents and three or more dead babies. The Center for Loss in Multiple Birth (CLIMB) tackles this issue at some length. Women on the SR boards like to write that there's a couple who suffered total pregnancy loss for every couple who takes home babies at the end of their HOM pregnancy. The medical facts we have don't begin to support that number: the average delivery wouldn't be 33 weeks for triplets if half of triplet pregnancies were lost at around 20 weeks. The number is probably somewhere between 10 and 20 percent overall, that October 2004 article above notwithstanding. And who wants to risk a 10 to 20 percent risk of total loss?
Unfortunately, once you've conceived an HOM pregnancy, you're already screwed on the medical front. You're facing a frightening, paralyzing risk of total pregnancy loss regardless of what you do. The SR procedure carries, on average, probably, a 5-7% risk of total loss, with the irony being that the less access you have to experienced SR doctors, the less access you have to experienced HOM perinatalogists, too. Twin pregnancies themselves carry a risk of total pregnancy loss, probably in the area of 3-8%.5 Looking at those two numbers together, SR improves your chances to some extent, but not necessarily enough. Meanwhile, we know that SR improves pregnancy outcomes on average by 1-2 weeks for triplets reduced to twins, and 4-5 weeks on average for quads to twins. But what we don't know, because no one has done a good study on this, is how many of those reduced twin pregnancies are still going to deliver at 28 weeks or before. There's no clear evidence to show that a woman whose SR twins were born at 24 weeks would have delivered her quads at 19 weeks. There's no clear evidence to show that a woman who delivered her SR twins at 37 weeks would have had complications if she'd gone forward with triplets. Maybe the quads mom was screwed regardless, and maybe the triplet mom could have done just as well without selective reduction.
No one has done the damn studies. No one, not one single medical researcher, has begun a database of all women who present to REs and Peris and OBs with multiple pregnancies, and tracked exactly what interventions and complications they experienced, and what exactly were the outcomes for all their originally-conceived fetuses. We certainly don't have the kind of database that would allow us to apply outcomes data to women with particular medical histories. Find two or more heartbeats on U/S at your RE's office? Your RE will have only the most limited information to give you about your particular set of risks. It's maddening.
So here's my advice, if you somehow stumble onto this site through a google search (I doubt I'll ever rate, frankly) or if you end up here via an infertility blog link (hey, I'm on a few lists now--and by the way, thanks, that's very cool of you).
- Only implant two embryos. I know, I know, I know--but look. Just. Don't. Do. It. You're infertile, the statistics have already screwed you. You have no reason to believe you're not going to end up on the screwed end of the margins again. Two. Embryos. Only. (I hereby call upon getupgrrl for backup on this point.) And do keep in mind that the rates of monozygotic twinning are considerably, markedly higher in IVF, especially 5-day blastocyst transfer, so even two embryos might still lead to three or more babies.6 Remember those stories about the quad moms with the two sets of MZ twins, and how they had beaten 1 in a million odds? Only, hmmm, there were two sets of those babies in less than six months? That's because with IVF, the odds of twin twins in one pregnancy is exponentially higher than 1 in a million.
- Too late? Whatever you do, DO NOT take SR advice from your RE. Do. Not. Do. It. REs who see more than two sacs on their monitors are all thinking the same thing: Fuck. Shit. Bullocks. You didn't go down to the NICU for help getting pregnant, don't hang around your RE office looking for advice about HOM outcomes. Get thyself to a perinatalogist, ideally one working at a university hospital, certainly one associated with a hospital that includes a Level III NICU, and get thyself there NOW. Find out how many HOM pregnancies that perinatalogist has managed in the last year, how many SR procedures their affiliated doctors do, and proceed accordingly. (If either answer is less than 12, go out and find another perinatalogist.)
- Allow me to quote a TC member who suffered a total loss for this next part. Her name is Steff, and she lost her babies a year ago at 19 weeks. First, she says she's sorry now that she ignored the SR advice of her doctors at the time. Then she writes:
I would ask a lot of questions [about SR]-- why, specifically, they think I am at risk; what specific issues they expect that I would face, etc. If I were to determine that their concern was just a general concern that they share for all HOM patients, then I would consider that as I carefully weighed statistics, etc (it's terrible that that's what it comes down to). If their concern was more specific to my particular pregnancy ... I would listen very carefully. I would ask how many parents they've treated in similar circumstances who had gone on to have successful pregnancies ... and how many turned out otherwise.
- If you can't restrain yourself from becoming Dr. Google, do a search on PubMed for multifetal reduction. Browse the bibliography at CLIMB. And please, don't feel that you have to pretend that medical issues are the only nightmares keeping you awake nights. With SR rates estimated at 33-40% in the USA (and the studies I've cited showing rates as high as 72% at major urban ART clinics), clearly a lot of multifetal reductions are done for reasons people don't always like to admit: lifestyle issues, simple economics, and the vivid dreams about parenting that sustained them in the midst of ART. Amy Richards, for all that her "Lives" piece in the Times Magazine was a mess, offered a marginally coherent explanation about reduction vis-a-vis economics/lifestyle in a private letter published online. (As an aside, when Amy claimed that it would be easier for her son to know that two siblings were aborted than adopted, I think she revealed some disturbing personal--and cultural--biases about birth parents, adoptive families, and adoption generally.) Another good article to consider? K.S. Collopy's April 2004 piece, based on interviews with folks she found on the internet: "'I couldn't think that far': infertile women's decision making about multifetal reduction."
- Now you might want to visit an SR board or two: the boards at INCIID and Fertile Thoughts seem to generate a fair number of responses to new posts. There are active pregnancy/parenting forums at both the Triplet Connection (TC) and Mothers Of SuperTwins (MOST). But keep in mind that the multiples groups will be mildy to profoundly anti-SR, and the SR boards are kept active by folks with their own set of biases and beliefs. If you find yourself drawn to one community or another, you're probably already more than halfway there in your decision.
- Decide what to do, do it in the best setting possible, and please don't second-guess yourself. You did what was right for you. Good luck with your pregnancy. If you're still carrying HOM, get the pregnancy packet from the TC and please, whatever you do, make sure you're getting weekly monitoring from 16 weeks onward. Things can get tricky at 16 weeks, whether you reduce or not, and you want to make sure your doctors know you need a cerclage before it's too late.
Okay, that's it. I can't promise I won't revisit the issue later, but I'd rather not. The whole issue hurts my heart. I hate infertility.
- The rates of pregnancy loss after multifetal reduction are all over the place. A December 2004 article in the American Journal of Obstetrics and Gynecology examined 290 multifetal reductions at a top clinic in the USA and discovered a 6.5% total loss rate: 3.5% when done transabdominally and 13.3% when done transvaginally. Back in 1997, E.R. Norwitz and A.C. Vidaeff found mean total loss rates of 17% (within a range of 5-30%) as discussed in their article "Controversies in Multiple Gestation," Contemporary OB/GYN, 42(12), 54-88. (I'm sorry, I can't find a link to the article on PubMed, and I don't want to use the link via Medline for fear it will be broken for those on non-university ISPs.) The question is, what are the rates at your clinic? They vary wildly, such that posters on the SR boards almost always advise people to travel to major cities for the procedure.
- The article, published in June 2001 in the Journal of Maternal-Fetal Medicine, was titled "Shortened gestational age following multifetal pregnancy reduction: can chronic placental inflammation be the explanation?"
- Mothers of Supertwins has posted a collection of SuperTwin Facts, including average gestational ages, compiled from survey data they collected between 1987 and 2000. John Elliott, the so-called "Quad God" at Good Samaritan in Phoenix, provides some rough estimates on gestational age in an internet article on managing HOM pregnancy.
- One of the medically-literate members of the TC forum posted a very, very long summary of an April 2003 article regarding HOM pregnancy outcomes in Current Opinion in Obstetrics and Gynecology.
- The National Organization of Mothers of Twins Clubs (MOMTC) last updated their chart on twin outcomes in 2002: it includes figures for 1997-1999 and seems to suggest a total fetal/infant loss rate in twin pregnancies of approximately 4%. In their abstract for an article, "Fetal reduction from twins to a singleton: a reasonable consideration?" Mark I. Evans et al. write: "physicians know that spontaneous twin pregnancy losses average 8-10%." They reference the 1999 reports of the American Society for Reproductive Medicine/Society for Assisted Reproductive Technology Registry in support of that number.
- There are a lot of articles on monozygotic twinning rates in IVF. One good place to start, especially if you love chasing footnotes, is "Monozygotic twinning following assisted conception: an analysis of 81 consecutive cases."
Thursday, December 02, 2004
But right at the outset, I reluctantly concede to myself that I'm duty-bound to declare the reason why I've been so reluctant, so unhappy, about writing about SR. It would be intellectually dishonest to do otherwise.
I think people who reduce from triplets to twins have made a huge mistake.
Every time I read the selective reduction boards, every time someone advocates reducing triplets in the comments section of some blog, I feel this visceral outrage, and a horror in my gut. As easy as it is for me to understand and emphathize with the entire gamut of family-building practices (and it's really easy, I think any and all routes are great, I'll get excited for you to the exact appropriate degree without becoming condescending and beginning to believe my opinion actually matters*), that's how hard it is for me to understand how people could reduce from triplets to twins. To some extent, the disconnect unnerves me. To feel so judgemental and pissed off doesn't fit my idea of myself.
SR in the case of quads and more, I understand. I ache for families facing the statistics on quad+ pregnancies, and I'm grateful I was spared that decision. We certainly never predicted triplets based on my estradiol or follicle measurements, so it could probably just as easily have been quads, or even quints. I'm exceedingly grateful it wasn't, because once you're carrying quads or more, the statistics are indeed stacked in favor of SR. And I would have hated facing that decision.
But to reduce from triplets to twins? Neither the statistics on medical outcome nor the realities of triplet family life justify reduction (at least not the various non-financial scenarios of triplet life I've seen invoked on-line, most of which are pure media-invention fantasy) . And it drives me a little nuts to find myself believing this so strongly. I should be a lot more tolerant, I think. I'll be looking for tolerance when I compose the second half of this story.
We ruled out SR at our first RE appointment. Saying we ruled out SR, though, was simply one way of saying that we refused to pursue any protocol in which it might become an issue.** I don't think either Calder or I ever ruled out SR simply on the basis of its mechanics. In general, we're pro-choice in our politics, and I grant no scientific arguments against abortion in the first 16-18 weeks. I do know that I had a gut instinct that making that decision -- to abort one fetus in the midst of an otherwise-wanted pregnancy -- would cause me extreme emotional distress. But I also knew that most women who choose abortion express contentment with their decision--they report feeling that whatever grief they experience is appropriate and not debilitating, or even terribly long-lasting -- and I knew in the abstract that SR could be the humane choice under certain circumstances. It simply wasn't right for us.
At this point, I'm duty-bound to disclose that Calder and I are church-going Lutherans. I embrace every truth revealed and celebrated in Psalm 139. But wait, wait! Before you hightail it out of here, it's on the basis of that same Psalm that we'd like to see the church normalize the status of gays: ordain homosexuals regardless of whether and when they last had sex, provide a marriage ceremony for homosexual Lutherans (the current one references God creating us male and female for each other, but most of the liturgy requires no amendment or alteration), welcome homosexual parents at the baptismal font, etc. I'm pro-choice, anti-voucher, anti-prayer in schools. Just consider me a Lutheran in the old-fashioned progressive "live and let live, hard to say what's right, you betcha" Garrison Keillor sense of the word (but not so inhibited, obviously).
Nevertheless, I never felt that my opposition to SR was based on religion. If you had asked Calder and I to explain why SR was off the table in January 2000, we would not have quoted the Bible. We would simply have said that it felt wrong. We certainly did not express, to ourselves or others, the sentiment that Julie finds so dominant in HOM stories, that "whatever happens is meant to be, that God will give and take away according to his wisdom." On the contrary, I spent a fair number of Sunday mornings raging against God, because if you sneak into service late after an "early"-morning appointment with your clinic nurses, you will find yourself stuck worshipping with all the families with small children. This is unpleasant, even if not ironic.
No, our oppositions felt rooted in behavioral ethics, not religious scruples. Most of what Calder and I knew in 2000 about SR came from the stories about the sex- and septuplets in the media. We tended to talk about the procedure between ourselves as a "cheap escape" for couples who pursued blatantly irresponsible ART protocols. Of course, I know a hell of a lot more about SR now, and I would never label it a cheap escape. But there's no denying that it struck us that way then. To consider or embrace SR, it seemed to us, entailed considering or embracing irresponsible treatment options. We were determined to do neither.
This was the background to our discovery that we were carrying triplets: we had ruled out SR, but not for especially well-thought-out reasons. It was simply a gut instinct, and one of several lines in the sand that we had felt called upon to draw before entering the process. We had seen too many people plunge further and further down the rabbit hole of infertility treatment, forgetting their way back home, changing into all sorts of unwieldy new sizes, psychological as well as physical--maybe good choices for them, but not for us. Calder and I made some promises to each other right at the beginning, and we intended to stick with them. No SR was one of those promises. But never forget that "No SR" was really a promise about protocols -- rejecting it helped define our outer limits.
* I simply adore Gaudy Night and there's a great passage in the latter half of the book that's entirely on-point. Peter Wimsey comes to dinner at Shrewesbury College and advises one of the dons (maybe even the Head) that she should not ask him "that tired old question, whether I approve of women's education or not." (I'm paraphrasing.) And when the Don asks, why not? Wimsey replies, "you should not imply that my opinion in any way alters the rightness of the case." Or words to that effect. Dorothy Sayers is a much better author than I am. Obviously sexist, but still.
** In retrospect, our RE should have explained in simple, direct language that the only protocol in which high-order multiples are 99% guaranteed not to occur is single-embryo IVF. Where that would have left us, I don't know--we were dealing with a separate set of issues regarding IVF, and had ruled it out. I've always suspected that we would have plunged down the rabbit-hole ourselves, given enough time. In retrospect, we were sidling over toward that direction during the cycle in which we conceived the babies.
Speaking of which, I barely left the nursery--let alone the house--until the babies were almost nine months old. Long story, maybe I'll regale you with the details some day. But when I think back on that time, and my incapacitating fears, I suffer physical pain. I wish very much that I could go back in time and (a) offer myself a big hug and (b) tell myself to get over it already, and get the heck out of the house. What's the worse that happens? I'm nursing one baby astride the passenger seat of the minivan while the other two wail in their carseats? I have to abandon the almost-full grocery store and return home immediately because I didn't pack enough diapers? Turns out, neither scenario is as bad as it might appear.
Meanwhile, a tip for anyone trying to grocery shop with multiple infants or toddlers: push the stroller, pull the cart--and this is key here, pull the cart so it rolls forward. Grasp the front of the basket on the cart, not the handle. Do not attempt to pull the cart backwards--bad idea. But you can push a double stroller or a triplet stroller while pulling the cart (your right hand can do double-duty, wrap a few fingers around the stroller and a few fingers around the cart), and you'll never need assistance in the grocery store again. At least not until you want to discuss why, exactly, the cheap toys are displayed precisely opposite the breakfast cereal, and what became of the lovely, now-obsolete idea to provide candy- and junk-free check-out aisles.
Sunday, November 28, 2004
It was Sunday night. The babies had been born just after 11pm on Thursday, so even though the law guaranteed me 96 hours, I was being discharged the next morning. Thursday to Monday equals four days: Asshole Math. I had just survived three room changes in three days, my milk wasn't coming in for shit, and I ached all over. I also couldn't sleep for the scary belly rumblings as everything began searching for its original positions; apparently my reproductive organs just couldn't give up their habit of pursuing pipe dreams. So at 11:30pm, I pulled on this heavy fleece burgandy zip-up robe my mom had given me and shuffled down to the NICU, trailing visions of my grandmothers as I passed (it was that sort of robe). The halls were dark, the nurses' stations were glowing, and I finally saw the minifridges where all the snacks had been coming from. My universe was expanding.
After the nurses gave me permission to come in, and I'd washed my hands, I found myself in a peaceful nursery for the first time ever. Unlike the night of the babies' births, the room lights were dimmed and the noise level was muted. There were nurses talking in hushed voices while they sat on stools in clusters at the other end of the room, and halos of light over the babies at their stations. I finally learned that the stools had height-adjustment, so I could find a comfortable position right up next to the babies in their cribs (alas, on different sides of the room). Wilder was already in an incubator, Elba was asleep, but Gemma was fussing a little on her tummy -- tummy sleeping being just fine when you're hooked to a ventilator and enough monitors to handle incoming air traffic -- so I settled myself next to Gemma. For the next half-hour, I sat there in the near-dark, the woosh of the vent and the soft beep of the monitors keeping me company, while I cupped Gemma's body with my hand. With my fingers on one side of her back and my wrist on the other, I covered her torso from neckline to diaper. And under my hand, she drifted off to sleep.
Saturday, November 20, 2004
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
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
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?
Sunday, October 17, 2004
It's pretty clear that first postings go unread, so rather than do some silly introduction, provide a raison d'etre sort of thing, I'm going to respond to one of the (infertility) blogs on triplets that I managed to dig up while scrounging around infertility. But before I get to that, I'll acknowledge the possibility that I should just leave those infertility blogs alone. There are plenty of parents who comment at all the great infertility blogs (who wouldn't want to befriend some of those amazing women?) but still, shouldn't I keep my kids out of those women's faces? I don't know. I do know that no one like GetUpGrrl lived anywhere near the internet I knew, back in 1999 and 2000 when I was trying to conceive. I hate to miss out on knowing her just because my timing was off. And to paraphrase Tertia, "I am still infertile, I am just a mother, too."
But I'm going to leave the whole question of secondary infertility for another day.
Meanwhile, I want to address some of what Patricia wrote about triplets. Because I have them, triplets that is. They're three and a half, two girls (let's call 'em Gemma and Elba), one boy (Wilder? I'm straining for pseudonyms that feel like acceptable proxies for these kids with very specific and named identities), and they're wonderful. The conception, the pregnancy, the NICU? Not so much. But worth it. And not really deserving of these comments:
Don't people know the risks involved with triplets? The birth defects? The long term medical issues? Health care costs? Triplets are not something to celebrate! They are something to avoid.Wow. Why does that feel like such a punch in the gut? Maybe because my kids only seem like something to avoid when they've gone too long without food, and they're in that blood-sugar-crisis mode so beloved of all preschoolers. Maybe because yeah, I was intelligent enough to manage my infertility, I wasn't a complete moron about the risks attendant thereon. Or maybe because what Patricia wrote was followed up by this comment from Pazel (whose history with IUI was not entirely unlike our own):
How could a mother put her children's health in such jeopardy? Who would risk such a thing and call themselves a loving parent? For most, there are ways of preventing multiples in advance of their conception so selective reduction doesn't have to be a questionWell. At least that gives me a way to begin to address this. I can start by explaining how I failed to prevent my multiples, and to explain how I could risk carrying all three of them to term while still calling myself a loving parent.
Start with this: the first serious comment I made when I met my RE was, "we will adopt rather than conceive high-order multiples." Yes, I had done my reading, I knew the terminology. I was a lingering ABD graduate student, the husband (Calder? hmmm) is an only child with marginal feelings of affection for infants, and neither of us wanted the hassle, the career interruption, nor the potentially devastating medical costs attendant on triplets, or--God forbid--quadruplets. The RE was optimistic, I jumped through the requisite HSG hoops, Calder got the good news on his "great sperm," and we went to work seducing my reluctant ovaries. First, a round of clomid to confirm what the incompetent OB had already wasted a year proving: that Clomid didn't work.
As an aside, two questions about REs? Why are they all men, when obstetrics in general has become a field for women? And do all REs require their patients to write the depressing news, "many less than ten," onto the charts, or were my REs especially sadistic?
So, no go with the Clomid, indeed, no discernible activity on the old ovaries whatsoever. On to Follistim. Oh, wait, Fertinex. Because our pharmacy didn't provide Follistim, a tiny detail they didn't share with us in any way more informative than making the substitution inside the bag. Late on the Saturday afternoon we were supposed to begin injections. Oops. So, make that one vial of Fertinex (aka hamster pee) for 17 days, get that estradiol up to 384, push one of those follicles all the way up to 14mm, talk about doing the HCG shot in two days--and wham, watch the estradiol drop back down to 37 on day 18.
Spend a weekend in tears while Calder has long conversation with RE about whether we can thread this needle, walk this line, figure the damn thing out. Decide to switch to two vials of Gonal-F, add Lupron (to shut down whatever biological urge messed with the estradiol first time out the gate), and throw in Metformin for good measure. And yes, we worried a little. When your first goal (if you're Calder) is to get one baby, international adoption looks like a fine alternative to gambling with touchy ovaries. What if two vials pushes us from stagnant to teeming, from no follicle activity to septuplets? But I had fantasies about a cute little Calder clone singing "Away in the Manger" at the Christmas pageant, and the RE said two vials was nothing. Especially not for a woman who hadn't ovulated in ten years.
Lo and behold, the RE is correct. Two vials does the trick, I never once have to inscribe "many less than ten" on my chart, and at day 17, there's one lovely beautiful almost-mature follicle floating on the U/S screen, but four little 14mm thugs waiting to mess things up if we wait any longer, so even though two lovely beautiful almost-mature follicles would be better, it's time to move. Calder gives me the most painless HCG shot in the ass in recorded history (no kidding, Calder's an ace with needles apparently, or maybe it was just the hugeness of my long-suffering ass), we go in for two lovely IUIs, and two weeks later, to the day, I'm sneaking a store-brand pregnancy test into the bathroom and coming out with two faint lines. Or, as the nurse at the RE's office said, "you've won yourself a blood test."
Of course, the lab messes up the assay and I have to wait until the next morning (when I was promised a phone call by 2pm) but two more EPTs have already confirmed the original finding and when we get word that my beta is 182, it's a bit of an anticlimax. Go back for my tracking betas, levels climbing steadily but not in a multiplicity-type way, and then at 5 weeks pregnant (some funny accounting going on there, don't you think?) -- U/S shows one lovely sac and a little tiny shadow. It's a shadow, RE says. Come back in 2 weeks so we can make sure everything's going well, make sure there isn't a second baby lurking back there, I'm 98% sure it's just a shadow.
Calder's aunt, informed of medically-assisted pregnancy, asks, could you have twins? Oh, no, no, no, we say. We didn't do those irresponsible things that cause multiples. We were smart, we were careful, we have bloodwork and an adorable ultrasound image and an RE spouting 98% confidence in one.
Get home at 4am from vacation (it was the first of the United Airlines summers in hell), get up four hours later to pick up dog and drive to RE's for promised U/S -- by myself, this is routine, I've been too exhausted and nauseous not still to be pregnant -- and the minute RE graduates from the vaginal probe to the abdominal scanner: whammo. Three little sacs floating in space.
So that's how you can conceive high-order multiples while simultaneously not acting like a child-endangering idiot. It's taken me forever to type this, so I'll save the decision to attempt carrying all three of them to live birth until tomorrow.