Monday, December 13, 2004

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."

5 comments:

Anonymous said...

I know it must hurt your heart, but I just want you to know, you are doing such a good service. I have hung aroung the infertility community fow awhile, educating myself on my options. I wish I could find a polite way to direct my SIL here.
She has no uterus-Muellerian duct failure or MKRH syndrome. Her and her husband are planning to use a gestational surrogate, and every time they talk about it, they gush about how twins would be their best option, more kids for the money and such. It makes my head want to explode, because I know SO many women who lost twin pregnancies. They just can't understand that a multiple pregnancy is a risk, for the surrogate and the babies.
You are givivng great info, and you are providing wonderful help.
Thank You.

Cricket said...

Thanks. I had feared that the very act of SR invasiveness would be the trigger for additional, unintended reduction(s). It is the very reason I wouldn't have an amnio performed even as AMA. I'm a non-invasive sort. I appreciate you opening up your heart and mind here.

I recently posted a rant about the McCaughey litter and how they appear to be raising their children en masse, no differentiation allowed. These kids were born when my son was 2 months old and they've been stuck in my craw ever since.

Anonymous said...

I was very saddened as well to read their story. It is something that we didn't see as an option for us, but my heart goes out to anyone pregnant with HOM, because I know that it is sometimes in one's best interest. Our story had a happy ending, but I know that is not always the case.

Thank you for providing links and information to those who might be looking for the answer that is right for them.

Julie said...

Just catching up on my blog reading -- wanted to tell you that this post is AMAZING. It's informative, opinionated, and humane, just like everything else you write. Thank you!

Tashie said...

As a fellow TC'er and mom to identical BBB HOM's, I find your blog fascinating and informative. I am thankful everyday that I did not have to worry about SR (I conceived spontaneously, and I didn't know I was carrying more than 1 baby until 20 weeks). I will say, and add to your post that you need to follow your gut instincts! I knew...I absolutely knew that something was "wrong" with my baby, although I had never been pregnant before. There were lots of signs along the way, and my regular GP doctor chose to ignore them, and I was one of those people who believed Dr's knew best. I certainly have changed.

You have to listen to your inner body, mind, soul and spirit.
Thanks for such a great post!
Natasha