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.

Comments

[Mellie Williams]

I do find a round of IVF to be a lot easier than the adoption process. We have just said "no thanks" to adoption, after finding out how incredibly hard it is. We'll stick with doing IVFs.

[Tina]

Is anyone out there 37 or older, and still trying to conceive? I am. I had 5 embryos, but they were all just "average" looking. (slow on cell division and had fragmentations. Each one only had 4 cells by day 3) Well, I did not conceive.

I am now afraid that all my eggs will look this way becasue my eggs are 'old.' Has anyone else out there achieved pregnancy with just "average or slow" embryos?

Thx so much!
Tina

[Gudrun]

I had previously read about recommendations for transferring fewer embryos (my clinic advocates it, and I agree in large part), but I think the biggest hurdle to getting patients to agree is cost. If unlimited IVF were covered by insurance I don't think that there would be the same pressure to get pregnant (and pregnant with multiples) that there is now.

On the other hand, I'm one of those infertiles that wants the twins.

I've got a 19-month-old from our first IUI, and am newly pregnant with another singleton (after many more tries -- again IUI, but had four good follicles that could all have fertilized). 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. My issue is not cost but time pressure. My RE says I can have as many babies as I want -- one at a time. But that doesn't consider diminishing egg quality, because my husband will not agree to donor eggs.

I'm well aware of the risks of preterm labour and consequences to the babies, but I'm willing to deal with those things. I just have to talk my RE into letting me try for twins when I go back (straight to IVF) for the next one.

[Caroline]

I am a first time reader (mom of 4 month old boy/girl twins.) Thanks for adrressing this issue. I too was not given very much information about the risks of a multiple birth. Not sure if it would have made much of a difference though in my decision. I wanted a baby so desperately and I was caught in the trap of thinking how cute and cool twins would be. I think everyone initially thinks twins are cool - hence why I get stopped everytime we are in public and why there is a new fisher price twin baby doll house on the market! I can honestly say though that even if I had read a novel on the risks of a twin pregnancy I probably would have made the same decision.

My pregancy was fraught with issues from the beginning. I developed a terrible case of OHSS and had to be hospitalized for a week. I had to visit cardiologists, dermatologists etc. for the bizarre symptoms my body exhibited. I was on bedrest for two months prior to the birth of my twins - developed preclampsia and HELP syndrome after their birth. Luckily they were born at 38 weeks and were very healthy. I did feel a sense from some in the medical community like I needed to "suck it up" because I had chosen to do IVF and put back two embryos. Sort of like the feeling that infertiles can't complain about the difficulties of early motherhood because we have to be so grateful to have children. I wonder if I would have been treated differently if my twins were produced "au natural."

Anyway - I completely agree that couples should be given more warnings and information about the risks involved. But at the end of the day, I worry that too much legislation will take away patient's rights to make a choice for themselves. I love being a twin mom and feel strongly that it was my right to weigh the risks and make an informed decision for my life and my body.

Thanks again for raising the issue and I look forward to reading you more in the future!

[Another Anon]

Wow. You took the words right out of my brain. I have 16-month-old twin boys, who were conceived via IVF and born at 33.5 weeks. I had 7 weeks of bed rest, the last of which was in the hospital. I had an emergency c-section when they detected an abrupted placenta. My boys were in the NICU for 3 weeks. I didn't realize the how much higher the average cost of a twin pregnancy and delivery were until they gave us some statistics in a class for couples expecting multiples. I felt guilty and still do. But, to be honest, I would have been livid if someone had tried to prevent me from doing what we did on the basis of the costs to society/insurers, etc.
In searching for the reason I had difficulty conceiving/maintaining a pregnancy, I was diagnosed with stage 1 endometrial cancer, a mild case of cancer, if you will, but upsetting nonetheless because the typical treatment is a hysterectomy. But, I was only 36 and we had been trying to have a baby for 3 years. They let me keep my reproductive organs for the time being and suppressed the cancer with 15 month's worth of very high doses of progesterone. At the conclusion of the suppression, we tried IVF because I needed to get pregnant ASAP before the cancer came back. The naturally higher levels of progesterone your body produces during pregnancy would keep the cancer at bay during the course of a pregnancy, if I managed to actually get pregnant.
We transferred two embryos our first cycle, and I miscarried. Our second cycle, we transferred three, and I ended up pregnant with twins, who are presently running around in their Halloween costumes.
I had never heard of bed rest or the NICU until after I was pregnant with twins. I don't know if that knowledge would have changed our course, but I am shocked that it's not provided at the decision making stages in treatment for infertility.
I had a hysterectomy 3 months post partum. I am glad we were able to have twins, since we only had a short window of time to try to get pregnant. Our circumstances were unusual in that we had a "use-it-or-lose-it" situation with my reproductive organs. (OK, we could have harvested my eggs and used a surrogate, but that would have been getting us into a realm that would have been cost-prohibitive for us.)
I agree that the best way to reduce societal costs associated with assisted reproduction is for insurers to cover more treatment, including IVF. We spent $30K out of pocket and could not have afforded another cycle. If would-be parents did not have to worry so much about costs, there would not be so much pressure to transfer multiple embryos.
On a related note, we found the costs associated with adoption on par with our 2 cycles of IVF. What's up with that? Why is it so expensive to adopt? Adoption shouldn't be "easy" but, the cost should not be a bar, so long as the adoptive parent(s) can support the addition to the family. Maybe I did not look hard enough at adoption options, but I was frustrated that the costs of our 2 cycles of IVF were roughly the same as an adoption. I am a late commenter, but this post really resonated with me. I have never confessed how guilty I feel about the resources that were expended on our behalf so that we could have our twins. I am extremely grateful, though, and I can only attempt to pay that back by raising two compassionate and productive members of society.

[Emmie (Better Make It A Double)]

Anne: the irony in writing this is that I might just have blown it off if I had read it when we were "trying". Then again, maybe not. I hope your last try is the one that gives you a healthy singleton, and I'm sorry it has to be so hard.

[Anne Brassier]

Well, how refreshing to read something other than happy conclusion blogs with stupid smiley faces on them and trite comments like "Keep trying girls, I just know you'll get there".

Clearly I am a bitter + twisted multiple-failure IVF person who is starting to look at babies in the street like they are angel-devils taunting me with their chubby cheeks.

This is a very interesting thing to discuss. I have been very worried about the twin thing, but the more you fail (four times now) the more you think, fuck it, transfer two, double my chances - even though you know it doesn't. I think your comment may well make me have a single embryo transfer on what may well be my last attempt in a few months.

Just as soon as normality returns to my hormone-riddled body and central nervous system.

Thanks
Anne

[Liza]

Thanks for a very thought-provoking post. I also came via Julie and am a first-time reader.

Some of these ethical issues should even be raised in IUI. I got pregnant on my second clomid cycle, with 3 mature eggs. But everything that my RE discussed about the possibility of multiples sounded like, "well, caring for multiple babies is harder" and maybe a little bit "the babies tend to be smaller at birth." I definitely didn't think I was doing anything risky.

Lucky for me, there was just one fertilization and one healthy baby. But that's a lotta luck.

[michele]

I agree with SheilaC that nothing will change until insurance covers infertility treatments. We were into it 40,000 dollars of our own money, before I conceived our triplets. There was no way I was doing it again. I pressured the RE to put them all back because I didn't want any "leftovers" to worry about. If it didn't work, I didn't want to do another frozen cycle. Our doctor didn't even try to talk us out of it.

I got EXTREMELY lucky and have healthy children. When someone asks me now, I tell them to only put back two. The doctor I went to probably has the highest triplet rate in the West. We are an "epidemic" where I live. Nearly all of us went to him. I really find it hard to believe that this is just a coincidence.

[SheilaC]

Thank you for telling your story. I feel the same way: I love my triplet children dearly and am very proud of them. But if we were going to do IVF again we would not transfer more than 2 embryos.

I agree that people need to be much more aware of the risks in multiple pregnancy and for multiple birth children. Too many people still fantasize about how cute twins are, with no idea of the minority of twin pregnancies that do not have a "happy ending". And of course the risks are very significant for triplets or more. Our triplets were conceived through IVF (transferred three embryos of so-so quality). We truly did not believe we would get pregnant on our first cycle, and certainly did not expect to "hit the jackpot" and conceive triplets. We had been told of the clinic's statistics for multiple births, and knew vaguely that a twin pregnancy was more risky, but there were no specifics at all. We thought that if we got twins we could handle it, and we didn't believe the risk of triplets was significant enough to worry about.

I felt guilty throughout my high-risk pregnancy and the children's infancy, for consenting to those terrible risks. Our 30-week preemies did very well, and appear to have no difficulties now that they are 6 years old, but we know that the risks were real, and our children have been very lucky.

You don't mention the issue of "selective reduction", or multifetal pregnancy reduction, but it saddens me greatly to know that many triplet and higher-order-multiple pregnancies are "reduced" to twins. That's another way in which the fertility clinics may be able to shrug off higher-order-multiple pregnancies as somebody else's problem. I believe in choice for women, but I'd prefer it to be a well informed choice. And in the case of fertility treatments, the information should be read and choices should be made before conception, not afterwards.

[Jody]

It's impossible for me to imagine that anything will change unless and until insurance covers IF treatments. Our insurance company only covered $5000 per person for a lifetime of coverage, which meant that we started with IUI. Now, we would have started with IUI anyway, and we triggered with only one mature follicle, on only two vials of Gonal-F, after four failed clomid cycles (meaning, no ovulation at all) and one failed cycle with one vial of Follistim (again, no ovulation of any kind). And we had two extra little immature follicles grab hold for the ride, and ended up with triplets.

But it's hard to imagine how we would handle our treatment differently: we went from zero to three along the most incremental line possible. Would it have made sense, in retrospect, to do IVF and do blastocyst single-embryo transfer? Yeah, but only in retrospect. Who jumps right to IVF when you've never even ovulated once for any other form of ART? In the absence of any other predictive factors (blockage, male factor, etc)? Of course we were going to do a trial with IUI, and we were the Most Conservative We Could Be. Hour-long after-hours conversations between husband and RE (via cell phone on his boat in Long Island Sound) conservative.

Besides which, when it came to IVF, we had ethical concerns about the possibility of unused embryos. [In the same way that people need to take multiples risks into account, even when most folks don't conceive multiples, people need to decide what to do about excess embryos, even though most folks don't have any.] And we couldn't agree: Calder wanted to donate to another couple, I couldn't bring myself to consider such a thing. He couldn't face donation to science, or continuing to do FET regardless of family size. So IVF was never an option for us, because we didn't have an answer to one of the major contingencies.

Between cost issues, uncertain outcomes, and a total stalement on the question of excess embryos, we had determined that we'd go right from IUI to adoption. (In fact, we already had the paperwork and a social worker when we got pregnant.)

Still and all, because our clinic didn't want to cover the (then) $12K per cycle for IVF, they ended up with $365K in combined medical bills for me and the kids. Where's the cost savings in that one?

Anyway, when it comes to HOM risks, it's hard to know how to parse all this. The last time I could find statistics, more HOMs are conceived with IUI, Clomid, and spontaneously than through IVF. And while most two-embryo IVF transfers don't result in triplets, a fairly large number of triplets are the result of two-embryo IVF. Never underestimate the risk of spontaneous MZ twinning when doing IVF. All we know for certain is that the European protocols don't seem to reduce overall pregnancy rates that much, but keep multiple-birth rates way down.

It's never going to be an easy issue to parse.

[Emmie (Better Make It A Double)]

Dara - sounds like you went through what we did, plus a little worse! I'm so glad you're all ok.

[Dara]

First time reader and poster - I also found you through Julie's blog. I am the mother of 7 month old twin boys through IVF. I feel that the risks of twins was downplayed for us and it very nearly had tragic results. I also went into labor at 21 weeks and spent 15 weeks on bedrest. During delivery I had a pulmonary embolism and went into cardiac arrest mere seconds after my second son was born. We nearly lost everything...babies at 21 weeks, mom at 36. We are beyond blessed that we are all heathy and happy but I really feel like we got lucky because I had a fabulous Peri who watched me like a hawk. I just wanted one healthy baby - never wanted twins. I couldn't imagine life without either one of them now, but what a wild ride.

[Anonymous]

Amen.

[Jenn]

I felt like I was informed of the risks of pregnancy. Maybe over-informed if there is such a thing. I was immediately referred to a perinatologist and saw her at 8 weeks. She followed my entire pregnancy and I never actually saw a regular OB. Everyone had expected my pregnancy to be difficult and expected pre-term labor, but nothing happened (well until the delivery). I ended up having to be induced at 37 weeks.

What I wasn't prepared for was how hard taking care of two babies is. I think I would enjoy them so much more if they came to us one at a time. Which makes me feel awful for thinking that.

We have five embryos on ice. We haven't decided whether or not to even try for more, but if we do, I'd seriously consider a single embryo transfer.

[lagiulia]

Interesting post! Thank you for sharing your perspective. I did not go through IVF, but I do agree with what you said about not being told about the risks of a multiples pregnancy when meeting with our RE. It is a serious thing when a pregnancy becomes problematic, NOT to be taken lightly.

[mich]

Hello--first time reader and commenter..found you through Julie's post today. Thank you for your insightful post. I have TWO friends who got pg the old fashioned way with twins within weeks of each other (with kiddos very close in age to your boys). Funny, they were never made to feel like they were playing roulette with their bodies, because, you know, it happened naturally. AGH. Any, I think you did a great job addressing the issue, and your boys are beautiful. Enjoy them!

[Suz]

"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."

Yes. Absolutely yes.

I wrote on Julie's site that I would probably do it (transfer three, have twins) again; however, the costs were enormous and they weren't made clear to us in a way that we could understand - just a statistic here and there. We were told that there was an increased risk of pre-eccamplsia, without being told exactly what it was or the dangers. I got the over whelming sense that we'd just "worry about twins later, if it happened."

[Karen]

Thank you for this insightful post. It's funny, because most of the infertiles I know are adamant that they do NOT want twins, but studies show an alarmingly high number of women whose specific goal it is to have twins. My clinic is extremely conservative with women under 35, and always recommends transferring one embryo unless there are mitigating circumstances that present a need for balancing the risk.

Furthermore, they are extremely forthcoming about the risks of any multiple pregnancy (including twins) and practically force feed you the information on risks of twins and greater at virtually every visit. I do not think this is a bad thing.

Mostly, I wanted to comment to say how close to home you hit with the comment that you felt like you were "somebody else's problem" once you were pregnant. That's one of the things I find most disconcerting about this whole fertility process. I got pregnant, and I was sent off to be someone else's problem at an OB's office, I miscarried and my OB sent me back to be someone else's problem at the RE's office. I don't know that there's any really good way around this, but both directions it felt very jarring (though I don't in the least bit fault either set of doctors).