Selective Reduction: I give up

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).

1. 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.
2. 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.)
3. 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.

4. 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."
5. 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.
6. 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.

Footnotes:

1. 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.
2. 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?"
3. 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.
4. 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.
5. 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.
6. 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."

Selective Reduction: The background

I wanted to write something thoughtful, even philosophical, about our decision not to reduce. It turns out that even an account of the bare facts mires me in the online equivalent of stuttering. Nevertheless, at some point, I need to get the subject behind me. This is part I, in which I lay out our rejection of SR before the fact. Soon, I'll take on the job of explaining how our entire world view shifted once we knew it wasn't a theoretical position.

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.

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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.

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* 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.

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:

• 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.

The odd dilemma, the question that silences me, that leaves me thinking, alternately, "I must be missing something essential" and "What kind of crack are these people smoking?" is this: an unbelievably high percentage of triplet parents say they would do it again, even if presented by magic with the chance to have their multiples as consecutive singletons. I do not understand this. I will never understand this. I would give anything to have had a normal pregnancy, a full-term delivery, breastfeeding without supplements. But never mind the selfish, romantic images of parenthood that sustained me on the infertility road. I would give anything to have spared my children what their little bodies experienced in the first days and weeks of life. Have them one at a time instead? How can that not be the easiest decision on the planet?

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?