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?

Sunday, October 17, 2004

Not exactly offended

I stumbled into blogs via infertility, specifically a very funny set of infertility tickers at a little pregnant that showed up on the Triplet Connection back in August. That was right around the same time the Amy Richards selective reduction fracas was winding down, so it was an interesting time to plunge into the world of blogs. It's just taken me awhile to work up the nerve to join the fray myself.

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 question
Well. 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.