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quadruplets

Too pregnant: the quiet agony of high order multiples. Part III

by Ms. Myg on September 12, 2008

This is the third and final installment of my saga about being pregnant with high order multiples and facing multifetal pregnancy reduction (MFPR), wherein I’ll tell you all about me me me and what happened to me me me and the little nuggets inside of me. You can read the first part here, and the second part here if you haven’t and would like to take it from the top.

Back to me and what happened

By week seven, another ultrasound had revealed that only three sacs remained viable, but that one of the three remaining viable sacs actually had monozygotic (identical) twins. So I was down a sac, but up a kid. That means I’d actually started out with five. FIVE. But I was down to four now, so in a way there was little net change. The doctor told me to just wait another week to see what would happen, but I’m not the waiting type. No, really I’m not. If there’s a pending crisis, I need a plan.

Living in NJ, I am blessed to be only an hour away from Dr. Mark Evans, the doctor written about by Liza Mundy (whose brilliant work on multifetal pregnancy reduction I talked about in yesterday’s post.)  I called Evans’ office and spoke to one of his staff. I was both impressed and surprised that he called me back personally within the hour to talk. The conversation I had with him was refreshingly bullshit free. Just information. Like statistics – data – I could think over to make my decision. What kind of data? Data like this:

  • I had at minimum a 25% chance of miscarrying my pregnancy if I did nothing.
  • Because the monozygotic twins made the pregnancy act more like quintuplets in terms of risk, the risk of miscarriage could be as high as 50%.
  • The average delivery for quads is at 28 weeks – extremely premature.
  • There was a 10% mortality rate for each baby within the first year if they survived the pregnancy
  • There was a 6-10% rate of long term disability per baby, if they survived the pregnancy and survived their first year of life.

Some women are very brave and decide to carry these pregnancies to term, and I have to hand it to them. Some are blessed enough to have healthy kids. But so far I hadn’t been very lucky in the pregnancy department and after looking at the real numbers my resolve to reduce was as strong as ever. I cannot tell you how helpful it was to have actual data from, you know, a doctor who deals with this exact issue every day of his career, to help me make a decision.

Did I hate myself on some level for wanting the reduction? Of course. I am 100% pro-choice. I think the law needs to bend over backwards to protect a woman’s reproductive rights on every front. But did I want to retch every time I found myself praying that two out of the four heartbeats I’d heard would cease to beat? You bet I did.

Bottom line

I figured this was my first real test as a parent. And sometimes as a parent you have to put your own agony aside and think about what’s best for your children. As Dr. Evans said to me on the phone,

“You have to ask yourself, What is the most important thing here? If the absolute most important thing to you is having a healthy baby, then it seems clear what to do. But that’s the question you have to answer.”

Frog appropriately lodged in throat, I made the appointment to come in at the end of week 12 for the procedure. The procedure can be done anywhere from week 10 on, so why wait? Well, most miscarriages happen before week 12, and there’s little sense doing it when there’s still a chance of a natural miscarriage, unless for religious reasons you need it done earlier.

You have to schedule two days for this event. Day one would be the CVS test to determine if any of the babies had chromosomal problems that would lead to miscarriage or disability. Day two would be the reduction, based on the CVS test, the location of the fetus and if all else was equal and we wanted to know, the sex. We didn’t want to know and didn’t care about the sex, but it was an option if we wanted it. (Did I mention we didn’t?)

Family drama fear

You want to know one of my biggest fears about this? Dealing with my pro-life mother. My mom is an Italian-American Catholic with some fixed ideas about abortion.  You may think I had the option to just not tell her about the quad pregnancy, and I certainly did have that option. But the reality is that I am a terrible liar and I’m also very close with my mother. It was just going to be easier to tell the truth and deal with the drama than to cover it up. (That’s just how Italian families work, for those of you wondering. At least, it’s how my Italian family works…)

Mom was shockingly supportive. “You’re not doing this out of convenience! You’re doing it to save the lives of the others. You have to think of it this way.” And I did – I was just really relieved to see that she did too. Now, I didn’t mention that I doubted the Pope felt that way. But it does go to show how one’s beliefs can flex, luckily, to suit the actual reality that they live.

Dealing with the decision

My IVF doc had said, “Some couples like to leave these things up to nature. It’s easier for them. Some don’t feel that way.” And I had to think about that. How could you go through IVF – the most amazing technological feat of our time, really, and entirely unnatural – and at the point where you must face the possibility of losing all your potential children due to a high order multiple pregnancy, decide to “let nature take its course?” Nature by no means had gotten me into this situation. With the help of my doctor, technology and years of meticulous research, I’d gotten myself into it. I had no reason to assume nor hope that nature would just bail me out of it.

I needed a lot of processing, mentally and emotionally, to prepare for what was to come, and you probably would to in this situation. I prayed a lot. I am by no means a religious person. I absolutely can’t deal with church. But I have had the peculiar habit of praying ever since I was a kid. Maybe that’s more of the Italian in me, I don’t know. But I did pray and pray and pray that I would not have to go through this procedure. I needed to talk about it, but the trouble was I didn’t want anyone to know about it. Aside from my mom and husband, I did have one friend that just listened extremely well, which helped quite a bit. And I did a lot of writing. All these things helped me bear the agony of my decision. And I knew I would go forward and reduce in order to protect whichever fetuses I could from such high risks of death and disability.

The unexpected

At week 8 I went back for my last appointment and final transvaginal ultrasound at the IVF clinic. Same drill, naked from the waist down, lying on a table while getting poked in dark places with high cost machinery. I wasn’t expecting much change and I’d just about had it with the IVF clinic at this point. The one thing I should have learned by this point was to expect the wholly unexpected.

“Okay, there’s one…” the doctor said. “And here’s two…….hmmmmm….” and he was quiet for a few seconds, jamming that wand around up in there. “There’s no heartbeat in the third sac.”

“Really?!” now I’m sorry, but it just sounds and feels fucked up to be happy when your identical twin embryos die, which is what they did.

“Yes, there’s no heartbeat here. See?”

“Thank god…” I said it, and I meant it. As weird as it was, I did feel like my prayers had been answered. He printed out pictures of my now fraternal twin fetuses and handed them to my husband for inspection.

“Yes, it’s much safer for the pregnancy to continue now.” The doctor smiled, said good luck and left. The technician stuck her head back in the room as she was closing the door behind her and said, “Good luck and please send us pictures! Don’t forget about us!”

Like, really, could I forget?

I was lucky. Very, very lucky. But of course I worried and I still worry. What if I kept reducing? What if I reduced all the way down to nothing?

It’s been two months since then and so far so good. I actually did go in to see Dr. Evans for the CVS test, and I’ll post about that another time. I decided to do that test with him even though he accepts no insurance and I’d have to pay a lot more out of pocket, simply because I trusted him so much. That’s because he wasn’t afraid to tell me the truth.

You’re not alone!

If you’re in the situation where you’re considering what to do about higher order multiples, I hope you’ll find a doctor who will deal straight up with you on this topic. It makes all the difference in making your decision, whichever way you decide. Dr. Evans accepts patients from all over the world if you have the means to get to New York City and can pay out of pocket (insurance may reimburse you, but not likely for the total cost, which isn’t cheap. It was going to be $3900 to do CVS on quads, and $3900 for MFPR, for a total of $7800).

If not, and if you need a MFPR, please be sure to find a doctor who has done this procedure a lot. The most important factor in the success and the safety of the procedure is the experience and skill level of the doctor. My guess is a call to Dr. Evan’s office might point you to resources to find the right doctor for you.

If you’re in this situation and the most important thing in the world to you is having a healthy baby, and if you decide MFPR is what you need to make that happen, then know you’re making a good and brave decision that’s going to increase the likelihood of that reality.

And know I’m behind you, and I get it.

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Too pregnant: the quiet agony of high order multiples. Part II

by Ms. Myg on September 11, 2008

This is Part II of my saga of going from a quintuplet to a twin pregnancy, wherein I’ll cry foul and give you some additional stuff to read on the topic of multifetal pregnancy reduction. You can read Part I here. The conclusion of the story is here.

What they say about the third time

Two nail biting weeks after my third trial of IVF, I got a call from my nurse telling me I was pregnant. Not only that – my HCG levels looked really, really, really strong! Wow! In fact, she said, it could be more than one! Yippee! Maybe it was the twins I’d been dreaming of all along. It wouldn’t be more than that, of course, the risk was so low, right? “Nah…” I thought. But worried anyway.

I told my mom I was pregnant, to her extreme joy. And I told her that I might be carrying more than one baby. Her reaction – which is typical – was to joke around about having triplets or quads. “Manny, Moe and Jack!”  Somehow I didn’t find it funny. “Triplets or higher order multiples are a medical disaster, Mom.” I’d said. “Pray it’s not that.” She said, “When I was a kid, there was a family down the road that had triplets and they were fine!” Like many, she didn’t know much about all those families that haven’t had such great luck with higher order multiples.

See, if you pay attention to any kind of media on this stuff, the stories about multiples higher than twins are all these “miracle babies” triumph pieces. And to be sure, those babies who actually survive the pregnancy and go on to lead healthy lives are worthy of celebration – because they are indeed miracles of modern medicine. The operative word here is miracle.

You don’t see many news stories on the women who bravely decide to carry their higher order multiples to term and aren’t so lucky. Where are the stories about all the women with triplets and quads who miscarry? Or those who give birth and have still borns? Or those who have their babies at 28 weeks and those kids go on to suffer with all manner of physical and developmental problems? I’d venture to say you could actually find more real women with stories like that if you tried. But I suppose here’s one case where good news is more interesting to the media than bad news. “Woman pregnant with quads miscarries at 20 weeks” wouldn’t be much of a headline, would it? Too mundane, really.

Reality bites

In any case, after the news of my positive pregnancy test I was eager – and anxious – for my first ultrasound. With IVF treatment, you have a transvaginal ultrasound about a week after your pregnancy test, which is around week four. They can take a look and see how many sacs you have and if there’s a viable embryo growing. My doctor dimmed the lights and started poking around up there. My husband was at my side. “There’s one…” the doc said. “There’s two…hmmmm.” He was quiet for a few seconds. “Okay, there’s a third here. And, it looks like you’ve got a fourth one here too.”

“Four? I’ve got four?”

“Looks that way. But it’s still early. They may not all continue growing.”

The triumphant joy I’d felt at finally – finally – being pregnant vanished into an agonized frustration.

My mind raced to a cousin of mine who’d had IVF and had gotten pregnant with triplets. She miscarried the entire pregnancy. She’d been offered what’s known as multifetal pregnancy reduction (MFPR or selective reduction) but she didn’t go that route. Whether she miscarried as a result of that choice or for some other issue, she’ll never know. But I knew already, if that had been me, I’d reduce.

Now that’s what I was thinking about.

Still half naked on the exam table, I burst into tears. The doctor scrambled to find tissues. My husband squeezed my hand. I began asking about my options, where I could go, who I could talk to.

“It’s early and things can change,” the doctor said. “Let’s see how you do here over the next few weeks.”

“Is it likely that I’d naturally reduce all the way from quads to twins – without having a reduction performed?” I asked.

“Well, it’s not typical that it happens like that, but it could. And these days with triplets we can manage them pretty well. Either way, the odds of a decent outcome is roughly 50/50 whether you reduce or not, so it’s really your choice what you want to do.”

Bullshit

You know what folks? That’s simply not true. The odds of a decent outcome are definitely NOT the same whether you do MFPR or not. If you have MFPR and reduce to twins, your rate of losing the entire pregnancy is 6% – and that’s the same rate of potential loss if you have twins to start with. If you try to carry a triplet pregnancy, your rate of losing the entire thing is 25%, with another 19% of kids born as triplets dying before they turn one. Then there’s a greater risk of dangerous pregnancy complications for the woman. So don’t fucking tell me there’s no difference, okay? There’s a big difference.

My doctor was a coward. I don’t know if he was secretly religious or if fertility doctors are so bullied by lawsuits and the right wing that they’re terrified to tell you the truth about the actual data about multiples.  “It’s up to you.” he’d said. Well thanks for handing the responsibility to me – I KNOW it’s up to me. But, am I a fucking doctor? How am I supposed to make these decisions without the correct data presented to me?

Where to turn

It’s another situation where the patient is left to her own devices. My device? The Google. Now if you’re going to turn to Google to research something as gut wrenching as MFPR, be warned that you’re going to wade through a lot of garbage and for God’s sake STAY AWAY FROM FORUMS where a bunch of nuts lurk and tell horror stories.

Instead, I’d say start with this extremely helpful piece, believe it or not, from Yahoo Health. It’s called “Should I consider a multifetal pregnancy reduction?” and comes complete with a decision guide. It’s one of the more clearly written articles online on MFPR. One misleading piece of information in the article is that MFPR can be done during the first trimester. That’s true, but it can be done in the second trimester too, if your doctor is willing and capable.

Then, if you find yourself in the camp of considering MFPR seriously, please read “Too much to carry?” It’s an article written by Liza Mundy for the Washington Post in 2007. There’s also an excellent follow-up feature of Mundy taking questions from readers that’s also well worth reading.

The article itself features Mundy shadowing Dr. Mark Evans of New York City performing MFPR for two patients. It gives an account of the CVS (Chorionic Villus Sampling) procedure – a test for chromosomal problems that is given prior to reduction – and the reduction itself. I will not say it’s an easy read, but I will say it’s a must-read if you are in this situation and considering this procedure. It couldn’t have illuminated better for me what was in store.

Liza Mundy’s article was a reprint from her book, “Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World.” This Q&A segment where Mundy is asked about her experience writing the book is ripped from the book’s website:

Q: What most alarmed you?
A: The explosion in multiple births. No question about it. So many parents conceiving through ART end up with twins, triplets or even more. Many of us—and many ART patients, starting out—have the idea that a lot of very tiny babies, born as a set, are something cute or desirable—an entire family, delivered overnight! In truth, these babies are far more likely to be born premature, and to suffer from lasting and severe medical problems, and they place a great deal of stress on their parents. The industry needs to do much more to eliminate multiple births, and it can do more. I interviewed patients who had suffered so much tragedy and grief as a result of conceiving multiples, and inevitably they had not been adequately warned of the dangers involved.

I was rather upset to agree. I didn’t think I was adequately warned. Another point she makes is that fertility clinics are not required to report the number of resulting multiple pregnancies from their procedures, so it’s difficult to track exactly what percentage of women go through this special kind of hell. And although this is anecdotal only, from other women I’ve talked to or have heard about undergoing IVF in their 30s, it’s not at all uncommon to be pregnant with triplets or higher after the procedure.

Jump to part III.

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Too pregnant: the quiet agony of high order multiples

by Ms. Myg on September 11, 2008

I’m pregnant with twins now, but I started out with quintuplets. Yes, of course I had In Vitro Fertilization (IVF). These things don’t just happen in nature very often – with good reason.

My road from near obstetrical disaster to hopeful expectancy was gut wrenching and at times, dark and lonely. If you’re on it or even just curious about it, I want to share with you how it went for me, and hopefully offer something that might make the road a little easier for you.

The topic of higher order multiples hasn’t received the kind of media coverage women undergoing fertility treatment need. So, this post will be part of a mini-series on higher order multiples, and will include a mix of my personal story and some facts and resources you’ll want to know about.

Some background on my infertility woes

My own infertility issues stem from blocked fallopian tubes. One tube was blocked after a naturally occurring ectopic pregnancy I had in 2007. The other tube, who knows? “Could have been a number of things. An infection you had and never knew about. Maybe Chlamydia…” my doctor said, in front of my husband. Nice, right? “I’ve never had Chlamydia” I told him. “Well, you could have had it and not known about it.” Why did he keep going down this road? Seriously now.

The upshot was both tubes were jammed and my only option for getting pregnant was IVF.  In the context of the long initial explanation of the IVF process, our doctor talked about the number of embryos that might be transferred back into my uterus after fertilization. Briefly. My recollection is that this part of the discussion was real quick, with the risk of multiple implantations – multiple potential babies – minimized. To paraphrase,

“Given your age, we’d probably go ahead and put three or four embryos back, depending on the quality. There is a risk of multiples when you put more back, but the risk of triplets or higher is very low, and most couple are usually alright with twins if it works out that way.”

We were downright psyched at the possibility of twins, but not so much about the possibility of triplets or more. But the risk was very low, right? We didn’t ask any more questions about it at that time. Why would we?

Duking it out in the IVF ring

Our first IVF attempt didn’t produce very good embryos. There were four viable, but there was a good deal of fragmentation in each and they weren’t growing so well (if you’ve been down the IVF road, you know of what I speak, but if not, you can read about process here). Still, my doctor felt there was a small chance of pregnancy if we transferred all four. There was little worry about multiples as the odds of even one implanting weren’t good. So we went for it, and were predictably disappointed when there was no resulting pregnancy two weeks later.

During round two, the embryos looked a little better, but it was recommended that we go ahead and again put four embryos (all the viable embryos that we had produced that round) back as well, given our previous failure. We were more hopeful, and more disappointed when there was no resulting pregnancy.

For my third and final try of IVF that would be covered by my health insurance (love New Jersey for this – if you live here and have insurance, your carrier is required to pay for IVF or other fertility treatments), I had much better looking embryos. That didn’t stop the doctor from recommending we go ahead and put all five back. After all, we’d had such terrible luck before. And you know, my age. Who was I to question the doctor? I really wanted a baby and this was my last chance. “Put them all back!” I was wholeheartedly for it.

Edit: Jump to Part II

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