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.
