Better Make It A Double

eggs in one basket: The IVF ethics post I really didn't want to write, part III

Here I go again. There was a series on infertility treatment in our local paper this week. The last article mentioned that the clinic that did our IVF(s) is losing money because it isn’t doing the aggressive marketing that other local clinics are. Our university-based clinic had, at the time we did IVF, the lowest high order multiple rate locally, with no quads and only two set of triplets in year before we received treatment.

I still have some criticisms of how our situation was handled, in that I believe that clinics need to move toward single-embryo transfers*  in situations like mine (otherwise healthy, young, good IVF candidates),
but I think this clinic had and has the most conservative approach in town. I’m not sure it’s just a lack of aggressive marketing that’s resulting in less people choosing that clinic, because any local infertile contemplating her options is probably weighing her options quite carefully with an eye to actually getting pregnant and our clinic's pregnancy rates are very good. In fact, I think it’s kind of insulting to assume that women are sitting there looking at a bus stop ad that says Finally You’re In Charge, thinking “I think I’ll let that clinic knock me up”, as if walking through the doors of any fertility clinic wasn't, oh, Plan X.

I think it quite possibly has more to do with demand – patients at other clinics are more likely to have a say in just how pregnant they could possibly become (and a good percentage of infertiles want twins), and they know it, thanks to Resolve meetings and IVF Connections and the like, and they’re not as likely to be told they might never carry a pregnancy to term**. They’re also not being given a ton of information about the realities of twin or HOM pregnancies. The result: more twins, more HOM’s*. The fact that the one clinic that’s refusing to transfer more than two decent looking embryos into good IVF candidates (or at least it was that way when we did IVF) is actually losing money makes me incredibly sad, because it means we’re that much further from having better options like single embryo transfers available to even those that request them. The short-term logic of capitalism will almost always trump the logic of the big picture.

I realized as I was pondering these issues that this actually isn’t much of an infertility blog, is it? After all, the boys were 5 months old when I started writing here – long after the beginnings of infertility (three long years), the failed cycles, the medical treatment, even the rocky pregnancy. That whole fine Hell is largely absent from what I write about, absent even from most of my archives. This space is a safe space for my current stage of life, as a mother of young toddlers. I don’t always remember anymore to acknowledge the terrible pain of infertility when I whine about how hard it is to take care of toddlers. I still think about it, though, and if there are any still-infertiles out there reading this – I am sorry, and I hope your Hell ends too. Preferably with a singleton, because you and your family simply have better odds that way.

Because this space probably isn’t any kind of haven for infertiles, I also can’t assume we all have a basic grasp of the facts. A lot of people think that IVF, being the “big guns” of infertility and all, is where all those high order multiples come from.

That would be entirely incorrect.

IVF has its own ethical issues to consider, to be sure, but its inherent precision makes it much less likely to result in HOM’s, and sextuplets and the like are just about impossible. The likeliest situation to result in HOM’s, if I remember correctly, is the unmonitored IUI, a first-line treatment that may just be offered right in your own OB’s office along with a $5-10 prescription for Clomid. It’s still all about money, though, because chances are, your insurance will cover that. Your insurance will also cover the costs of carrying any number of embryos you end up carrying, as well as any complications you yourself may suffer, and for much of the cost of paying for potentially lifelong medical care resulting from prematurity.

Covering IVF would, according to one of the above-mentioned series of articles***, add a half-a-percent to the cost of insuring everyone. I’m no statistician, and I don’t have access to all the numbers, but I’d be willing to bet that even that half-percent might go down if there was a significant decrease in the amount of HOM’s.

IVF still results in plenty of twin pregnancies though. The actual cost of all associated medical expenses might go down even further if folks like myself weren’t under so much pressure to have IVF work on the first couple of tries or go broke**** . Single-embryo transfers in good IVF candidates are almost as likely to result in a healthy baby as two-or-more-embryo transfers. But not quite, and there’s the rub*****. Or maybe the profit margin.

It will be a fine day when people who want to build families simply have informed access to the best options available with the lowest risk to all involved, and in some cases it's not the technology that's holding us back.

For more on infertility, echnology and ethics, you may want to check out the article In Vitro Veritas
by Stephanie Wilkinson in the current issue (Fall, 2007) of Brain,Child. Her sensitive and well-researched article about reproductive technology helped me make some sense of the several books out on the topic, including Beth Kohl's Embryo Culture, Liza Mundy's Everything Conceivable, and Peggy Orenstein's Waiting for Daisy.
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*European countries have been doing single-embryo transfers for years, and some have legislation requiring it. In young, healthy women, it seems that if you can get pregnant and carry a baby at all, you are just as likely to be able to do that with one embryo as with two – it may just take slightly longer.

**The other clinics also seem to do a better job of offering finance plans and the like.

***Which I won't link to for my own reasons, but which you can find if you go the website of Minnes*ta's biggest cities' biggest paper for about another week.

****We actually did a warranty program,  and would have gotten 80% of our procedure costs back if we hadn’t succeeded in three fresh cycles, but clearly if the clinic is losing money on that program, it couldn’t afford to give us four tries. We couldn’t have done IVF without that program (we probably would have moved straight to adoption, because there was no way we could afford both), and we also couldn’t do the program and demand single-embryo transfers.

*****Actually, even that may no longer be true. The rates may actually be fairly similar in some programs, but, as my doc said when I asked him about it, "we're just not quite that courageous yet".

 

The IVF ethics post I really didn't want to write, part II

This post got a big response, both in e-mail and comments.* Your responses were thought provoking, validating, and heartbreaking, and I thank you for taking the time to share them. I realize that there are a lot of factors to consider, and that there's more than one legitimate perspective on the ethics of embryo transfers and fertility treatment in general**. In fact, I am working on another response to all the interesting and heartfelt feedback, and addressing some issues I didn't get to in my first post.

However, the most recent comment ( by Gudrun) kind of sidetracked that for me. As respectfully as I can, I need to take some big-ass umbrage at this statement:

Because I'd like four kids and am nearing 36, twins seems to be a relatively easy solution for getting there before I'm 40.

Hon, I'm just not entirely sure you're following this. Perhaps we ought to call a spade a spade and rather than simply refer to mutiples as "riskier", lay out what we're actually talking about.

You have (or soon will have) 2 singletons. With a twin or greater pregnancy, you will:

• Double your chances of miscarriage .
• More than double the chances that you'll losing one baby after 20 weeks or in the first month after birth.
• Possibly be among the 10-20 percent of women carrying twins will develop preeclampsia, twice the rate in women pregnant with one baby. (It also tends to develop earlier in the pregnancy and be more severe.)
• Placental abruption is more common, and is responsible for about one in five twin deaths late in the pregnancy or in the babies' first month outside the womb.
• Almost half of twin pregnancies have fetal growth restriction.
• You will have an increased chance of severe morning sickness or even hyperemesis, insomnia, fatigue, general discomfort and pain, water retention and swollen legs, nausea, and problems moving about easily.
• Nearly half of twin pregnancies involve preterm labor. One third of those women end up delivering early (before 36 weeks).
• More than 20 percent of all twins are born before the 31st week with nearly 10 percent born before week 28. Similarly, less than 1 percent of all singletons weigh less than 1,500 grams at birth (very low birthweight) but nearly 10 percent of all twins fall within that category. (source: Everything You Need to Know to Have a Healthy Twin Pregnancy, Dr. Gila Leiter, Page 201)
• A very good chance you'll be on bedrest for weeks, or even months, possibly on a terbutaline pump that will make you feel like you just drank 6 pots of coffee, with no income and no ability to care for your other children.

Not to mention:

• There is nothing "relatively easy" about taking care of two newborns at once, especially if you just got done going through any of the things above.
• There is nothing "relatively easy" about feeling torn in half trying to bond with and meet all the needs of two distinct human beings that both want your 100% of your undivided attention at the same time.
• There is nothing "relatively easy" about having your kids spend their first days in the NICU, for any length of time.
• There is nothing "relatively easy" about breastfeeding twins (in most cases), or not being able to because you don't have the support or resources you need to pull it off.
• There is nothing "relatively easy" about having 2-3 times the chance of divorce compared to parents of singletons.***

There is research that shows that couples are often unaware of how risky multiple births are. This is the information that I would have preferred to know.  If you (Gudrun) were to say simply that you would be willing to risk twins in order to have a child, well, that would be one thing. In fact, that is the choice I made as well, though it was not a fully informed one. I also know that the costs of fertility treatments contribute greatly to the rate of multiples by upping the stakes of each try. I have all kinds of empathy for the hard choices infertile people have to make.

But even if things are quite a bit easier for you that they were for us, I have doubts that any of it will be "relatively easy".

Another reason why some women (including yours truly) not only risk twins but want them is that the thought of going through any more IVFs or other procedures seems so awful, but physically and emotionally. But in addition to not fully understanding the risks of having twins, I really didn't get that an IVF cycle has nothing on a complicated twin pregnancy, perhaps not even on a fairly uncomplicated one. For me, the anguish, fear and stress combined with the physical discomfort and pain of gestating twins made an IVF cycle seem like a day at a rather expensive and high-tech spa. That's not true for everyone, but there's a good chance of it being true even if you do end up with healthy, full-term babies. I know that sucks, but it's the truth.

I look at our situation as a learning experience with a very fortunate and good outcome. I am at peace with all of it. But it was not even close to "relatively easy", and I can't let that get by.

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*I love hearing from you however you prefer to communicate, but some of the e-mails would have been great for others to read. Posting anonymously is totally fine, if that's the concern. I won't erase respectful anon comments, even if I disagree with them.
**I thought this was interesting, as it gives some insight as to the barriers standing in the way of single embryo transfers.
***Dr. Thomas Beneditti, Director of the prematurity clinic at the University of Washington stated that multiples are twice as likely to die of Sudden Infant Death Syndrome, twice as susceptible to birth defects, six times more likely to have cerebral palsy and 2.5 to nine times as likely to be victims of child abuse. The divorce rate among parents of multiples is two to three times higher than the national average.

For more blog posts on these issues, go here.

The IVF ethics post I really didn't want to write

      

I have IVF twins. We transferred more than one "good-looking" embryo. When I read Julie's post today, my heart sank, because I knew it was time to write about something I've been avoiding.

It is hard to let two truths coexist. Truth 1: I would do anything for my twins, in fact, I love having twins, and I'm so very glad that my family feels "complete". It was worth everything we went through. Truth 2: I would not transfer more than one embryo again if I wanted more children, and I'm not sure that I didn't have some serious blinders on going into the process of IVF. I don't think we were given enough (read ANY) information as to the risks of a multiple pregnancy, and I will always feel like we were somebody else's problem once I actually got pregnant. I take some responsibility for this, but I'm not letting the infertility industry entirely off the hook.

We went to a state-of-the-art clinic and got "gorgeous embryos" with both fresh cycles. We transferred 2 the first time (negative), with a frozen cycle in between (mc at 5 weeks), and the third time (which worked). The third try is running around my living room trying to escape a diaper change, 19 month old twin boys. They are everything I ever hope parenthood would be and more.

BUT

I cannot do the mental and ethical gymnastics required to say that the end justifies the means. It just doesn't. We received NO (ZERO) actual information about how high risk twins are, just a comment here and there and a stated preference to avoid triplets or higher, but that "most twins do OK". What 2 years+ infertile who is desperate for a baby is really in a good position to even be able to imagine having one actual baby, much less more than one? There is solid information out there suggesting that a single embryo transfer in a young "good candidate" like me is just as likely to result in the birth of a child, my doctor even mentioned that this is the direction things are going, but that he "can't quite go there yet".

I first went into labor at 20.5 weeks. I spent months on total bedrest, on lots of medication and monitoring, in and out of the hospital for weeks at a time. My boys had a NICU stay that cost (our medical insurance) hundreds of thousands - for a fairly "uneventful" stay. The costs to our own savings, to our sanity, to my health, the difficulty of parenting twins after months of bedrest, were also astronomical. It was so totally worth it all, but I am still left with the conviction that if single embryo transfers are as effective (or close) for women like me (young, otherwise healthy, good candidates), then the costs to the women, their families and community should be more carefully considered. I am also curious why the clinic psychologist was so much more concerned with how my husband and I "handle stress" than with giving us any real information about the realities of twin/multiple pregnancies. It might not have changed our minds, but it would have been a more ethical approach.

For that matter, someone more objective than infertile couples ought to take a bit more responsibility for the decision to begin with, weighing the costs to everyone involved - the community, the parents, and the babies. The stakes are high when transferring embryos, but the costs can be much higher when more than one are transferred. It would help if insurance covered IVF so that the stakes per "try" are not as high. It would probably also be better if the RE's and the perinatologists actually talked, rather than acting as disconnected parts of a reproductive assembly line. I think my RE is a good man who cares about his patients, but he is almost entirely insulated from the consequences of what he does, beyond seeing his former patients in the elevator. In my case, I was on a walker, so debilitated from bedrest that I was unable to stand on my own. I felt both immensely grateful to the man who had succeeded in getting me pregnant, and vaguely betrayed.

I love both my boys more than life itself, but it might have been best to have them one at a time. I realize that this might be hard to read, and that this is just too easy to say after having had any baby at all. Believe me, I am aware of that, to the extent that I almost didn't write about this for fear of hurting or offending someone going through infertility/IVF. This is too important for me not to talk about. I am arguing for a more ethical and responsible approach on the part of infertility clinics, not trying to judge your individual choices. But please remember, we almost lost them both.

For Part II of this post, go here.