Thursday, October 21, 2004

Trying not to sound like an Asshole

It's almost impossible to explain how we conceived triplets without implicitly condemning some other people who conceived triplets. Trying to defend our own situation, trying to explain why we don't deserve to be reprimanded or penalized for our conception, I tend to yelp, "hey, we did everything right and we still ended up with triplets." And there it lurks: the implication that other people didn't do everything right. Other people messed up, and those people are bad.

Of course, that idea is claptrap. Hornswaggle. Total BS. Infertility is the ultimate slipperly slope, the definition of mission creep, and with every failed cycle, every miscarriage, every fetal demise and neonatal death, every unimaginable loss and heartbreak, people with infertility have to pick themselves up, examine whatever evidence has presented itself, and make the best decisions they can about their treatment. What's more, they make those decisions in the midst of battle fatigue, and more than a few of them are suffering traumatic stress injuries from the process. So don't like someone's choices? Don't approve of their outcome? Accept that you cannot know the road they had to travel, be humble, and shut up.

And yet. What to say to those foolish, foolish women who post IVF questions on the Triplet Connection? "What road has led you to inquire with interest after the protocols that might allow you, too, to risk total fetal loss, maternal physical breakdown, and the NICU?" What to make of the people being advised on selective reduction who willingly transferred five or six embryos, sometimes on their first cycle of IVF?

I try--not always successfully--to cut these people a lot of slack. No one believes she's going to be in that 3% that conceives HOM. Few of us are capable of hearing that information as we prepare for a cycle. You know how cancer patients are advised to bring a third party with them, so that someone in the room can hear, truly comprehend, what the oncologist is saying? Infertile people--especially, in my experience, the women--need one of those people there, too. Because we do not believe what we hear. And we're too often sitting there in those rooms alone, or accompanied by the one other person just as likely to be deaf to reality as we are (or worse, at war with us over treatment options): our partners.

And, to make matters far worse, our REs encourage us in our willful ignorance. Precisely because HOM are such a shameful result in the ART world, REs downplay the risk. They certainly do not share precise HOM conception statistics for your particular procedure. The best you can hope for are vague generalities, discussions of overall numbers or ballpark figures, a retreat behind the veil of physiological specificity: every situation, every cycle, is unique. How do the REs justify this? I don't know: there's a lot about their ethics I question. My best guess: most REs assume they can "fix" the HOM margin-of-error with SR.

I suspect most REs believe--because they spend so much time figuratively tossing around gametes and embryos--that SR at 12 weeks isn't that much different than embryo selection at 5 days. And most people deciding their next cycle are in one of two places: early enough in the process to believe that everything will go right, and they won't be the ones faced with SR decisions, or late enough in the process that they have to keep moving. Get far enough into infertility and you feel so broken by loss that SR seems like an acceptable alternative to blank despair. God knows, after multiple miscarriages, multiple failed IVFs, multiple mortgage refinancing packages, it gets damn hard not to escalate, to take chances, to implant more embryos than you want to carry, or could carry to term. After so much pain and loss, who can imagine that they could be sucker-punched with the greatest pain: a positive pregnancy test that isn't, in fact, very good medical news.

Every time I hear someone in the store say, "oh, I would loooove to have twins," I have to refrain myself from the lecture. You know the one: the lecture about high-risk pregnancy. The lecture about prematurity. The lecture about how every media portrayal of multiple pregnancy ever has been a lie. I don't give this lecture very often. Face it, in a world where anywhere between 30 and 40% of infertile couples express a positive preference for multiples, I'd be crazy to beat a different drum. Crazy, and arrogant.

Call me arrogant. Here are the facts as I see them:

  • 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?


Julie said...

Jody, I am so glad you're writing. This needs to be said by someone who's been there, and I hope people are listening. I know am, with rapt attention.

Anonymous said...

yes, yes, yes. This is what I was trying, albeit unsuccessfully to say.


Meh said...

Another v good post!

Anonymous said...

Can I just say, that was an amazingly well-written and coherent post. And the fact that it comes from a mother who's caring for three babies... well that just makes it plain 'ol miraculous!

I agree - I have nightmares about the sleep-deprivation caused by ONE infant, I can't imagine three. And that's just a topical consideration that's easily trumped by health concerns.

I think that yes, by God, that woman may have lost her ever-lovin' mind.

Uncommon Misconception
(who has no Blooger account)

tess said...

sing it sister.

with sebastian, we transferred three blastocysts ON OUR DOCTOR'S ADVICE, and conceived twins, m/c one around 14wks.

next time round, two years older, not nearly as healthy, not able to take it easy after transfer, we transferred three. different clinic, worse fert. results and embryo grading.

triplets it was. is. you know what i mean.

IVF IS the total slippery slope, and when you are playing the numbers game, despite what they say, IT DOES MAKE SENSE THAT YOUR CHANCES OF PREGNANCY INCREASE WITH THE NUMBER OF EMBRYOS TRANSFERRED. so while you are lying there legs and mind akimbo, and they ask how aggressive you want to be, you say VERY. aggressive is good, right? you read cosmo.

great post, excellent post.

oooh, and can i remind you about the biggest triplet birth myth of all? let's talk about FRIENDS' pheobe. giving vaginal birth to her triplets at around 36 weeks birth, no tubes attached to those little bundles of love. nothing, she was left alone with the babies to have a little chat with the little six pound angels after they were born. THREE TIMES THE FUN!!!

hats off for an honest post. i might pick up on the topic over at my blog. could you let me know if that would be okay??

thank you again, tess