In September 2011, from the moment my wife and I found out that she was pregnant with monoamniotic twins, I made the decision not to talk about it online until — unless — we came out at the end of it with two healthy babies. The idea that I could one day share this story with the Pajiban community — whether you guys wanted to hear it or not — actually motivated me during much of what would be the most harrowing 22 weeks of our lives. It was an experience that’s more important for me to tell than for you guys to read, but since this particular occurrence is so rare, it may also be important story to put out on the Internet where I hope it may provide at lease some comfort to others going through the same ordeal.
We found out during a 12-week ultrasound. The sonographer waved her jelly-covered wand around on my wife’s stomach for a few seconds and said “You haven’t had an ultrasound yet?” we said no, and she said, “Ok, well I have some news that will be a surprise. You’re having twins!” The news sent me in a panic. Two kids! How the hell were we supposed to take care of and provide for two more kids? My wife’s morning sickness had been unusually intense and lingering, so we’d joked that perhaps she was pregnant with twins, but twins didn’t run in our families and neither one of us ever expected it to be true.
While I was trying to process the news, the sonographer poked around for a few more minutes like she was looking for something. She got quiet, and I didn’t think much of it until she said she needed to talk to the obstetrician. She left, and for 45 minutes in the darkened ultrasound room, we laughed and cried a bit and I freaked out trying to figure out how badly twins would screw up our routine, how to afford them, how to deal with preschool and college and the million little things you don’t think about until they’re confronting you head on. But then the doctor returned, and grimly told us that our twins were monoamniotic, and those concerns immediately dissipated. Before we even knew what he meant, our hearts fell into our stomachs.
What are monoamniotic twins? As many of you probably know, fraternal (dizygotic) twins are the result of two separate eggs being fertilized, while identical twins are the result of one egg splitting (monozygotic). Our twins were monozygotic. Identical twinning is totally random, and typically, an egg splits by the 8th day after fertilization. Sometimes there are two placentas (dichorionic), but most identical twins share a placenta (monochorionic). Regardless of chorionicity, almost always in identical twinning, two amniotic sacs are formed. In rare cases, the eggs splits after the 12th day, which is how you end up with conjoined twins. In our case though, the egg split sometime after the 9th day ater fertilization, so there were two fetuses, with one placenta, and they were together in only one amniotic sac.
This is bad news. The doctor didn’t mince words, either. He told us that the twins might each be fine, but that it was also possible that one or both of them had a defect that would make them “incompatible with life,” because the late splitting can be consistent with very serious, profound genetic problems (like lacking organs or body parts). He told us that they would probably die, and that even if they were both genetically and structurally sound, they had about a 50/50 chance. He said that if we lost one, we would probably lose both, or the surviving baby would be severely brain damaged, because of the shared placenta. When there is nothing separating the fetuses, there is nothing preventing the babies’ umbilical cords from getting tangled up. Tangles can lead to compression, which cuts of oxygen and nutrients, and the cords can also wrap around a limb — or a neck — with disastrous results.
So we sat there, shocked and tired, overwhelmed by this transition from elation to stupid, petty concerns and then gruesome, terrible images of the worse obstetrical outcomes. We were advised to have biweekly ultrasounds - since there is no intervention that can help make the pregnancy safer, we needed to wait for several weeks for genetic and physical tests, and then continue to wait until my wife would be admitted to the hospital as soon as the babies would be able to be born. The idea that the babies could kill each other inside my wife’s womb was a lot to carry emotionally. My wife asked if she would know if they had died, and the doctor said no. So she asked if she could come for the ultrasounds weekly, to check on them. To see if they were still living. He said okay.
Can you imagine?
We were told that it was out of our control, to go home, not worry about it, and no matter what, don’t go on the Internet. I got into my car delirious with worry and fear, proceeded to back into another car, and after exchanging insurance information with the owner of the (parked) vehicle, drove home and immediately went to the Internet.
I should’ve listened to the doctor.
Monoamniotic twins are rare — they affect around 1 in 60,000 pregnancies (about 1 percent of alltwin pregnancies). We tried to read every study we could find, but there aren’t many, and they are all retrospective. Rates of morbidity ranged from 40 to 70 percent or even higher, depending upon which study you read. There have been just a few quality studies done on monoamniotic twins over the past decade and in all cases, the sample sizes were small (the largest study was done in the Netherlands involving 100 pregnancies over a ten-year period).
The gist of it confirmed what the doctor said, but the internet also suggested even more terrible outcomes than he had outlined. One twin dying in utero and the pregnancy continuing for weeks or months, ending with one stillborn and one live child, profoundly disabled. Photos of headless fetuses. It was worse than a horror movie.
Misdiagnoses of monoamniotic twins are common, so we crossed our fingers and hoped that subsequent ultrasounds would reveal two amniotic sacs. We did transfer my wife’s care from our midwives’ practice to the high-risk OB’s at the hospital, and laughed ruefully about how much time we had spent on our “birth plan” when our son was born. On week 16, we drove to Boston for a specialist ultrasound and to talk to an expert on the subject. My wife brought a bucket to throw up in on the way. There was no separating membrane. And the expert told us he saw monoamnoitic twins maybe once a year. But he was amazing, and British, and was really honest and kind and clear with us. There was a 50 percent chance we would lose both babies. There was a greater chance that we’d lose at least one, and there was an incredibly high chance — something like 70 or 80 percent — that even if both babies made it to delivery, one or both would have really serious lifelong problems: Mental disability, cerebral palsy, blindness, respiratory illness, or death shortly after delivery.
We also knew that, because of the nature of monoamniotic twins, at 25-28 weeks — if the babies survived that long — my wife would be admitted into the hospital for monitoring, and if there was any sign of distress, the babies would be delivered immediately, and we’d have to deal with the consequences of severe prematurity. Best-case scenario: The twins would be delivered six weeks early and live in a box with gadgets and doohickeys connected to their bodies for the first few weeks or months of their lives. The best case scenario was the most medicalized kind of birth, and a guarantee of weeks in the NICU. Keep in mind, we had our firstborn in the hospital, but we managed to end up with the natural childbirth my wife was hoping for, with no medications or interventions and with a midwife attending, on the exact due date.
The doctor in Boston was also willing to explain our option to terminate. Even though we were just getting the information we needed to figure out whether the fetuses were even viable, it was already too late to end the pregnancy in our home state, and we only had a couple of weeks to do so in Massachusetts. There was the possibility of selective reduction — ending one baby’s life to improve the odds of the other, but because they shared a sack, this wouldn’t avoid any complications, so it was clearly not an option for us.
The doctor told us that if we went forward with the pregnancy, if one fetus died in utero it would probably leave the other baby severely brain damaged. He said if that happened, we could make a plan to go to one of two states in the country — Florida or Colorado — that still have individual Doctors providing late-term abortions. Kansas used to be an option, we were told, but the Doctor who conducted procedures to terminate the pregnancies of severely brain damaged and deformed babies with no chance of a decent quality of life had been shot and killed. Ain’t that America.
We decided to terminate. It was the most difficult, most agonizing decision either my wife or I had ever made. We both are pro-choice, but when it comes to abortion, in the typical scenario, you decide to terminate a pregnancy you don’t want. We had made a decision to terminate the potential lives of two babies that we did want. That we wanted very badly. However, we felt that the risks were too high and that it would be irresponsible to risk not only our future but that of our son, who was four. We didn’t want him to have to grow up in a home with parents that had to devote all their emotional and financial resources to profoundly disabled siblings. More than that, we didn’t want to bring beings into the world that would have to spend a lifetime suffering, who might have a severely low quality of life.
The thing is, there was no one from whom we could solicit advice. There’s not even a lot of anecdotal information with which to work when you’re pregnant with monoamniotic twins. There is one major support page online, but there is a lot of self-selection in posters, and most of the people who write have had a positive outcome that has either confirmed or bolstered their religious convictions. Many of the posts make clear that termination was never an option — and/or should not be an option — for others in this situation, which we totally disagreed with. What we were aiming to do was make the right choice for us — a rational, logical decision that an objective couple in our situation would make. We were relatively young. We could still have more children. We could wait a few months or a couple of years and try again. The more we thought about it, the more sense it made to end the pregnancy. We felt — and we still feel — that this is a fundamentally personal decision, and we were shocked at the politicization of this medical issue, when of course nobody else can tell you what is right for your family. It is a decision that has the potential to fundamentally alter the entire course of your life, and until you are personally faced with something like this, there is no way to know how you are going to react or what the right course of action will be.
We made the appointment.
We felt immediately miserable about our decision. That’s the thing, isn’t it? When you’re pregnant, you’re in a heightened state of emotion. It’s too difficult to think objectively. We’d been going on weekly ultrasound visits for a month and a half, so we’d seen the two little guys floating around. We’d seen them touch heads in some ultrasounds and touch hands in others. There’s a real mortal danger in monoamniotic twins, but their ultrasounds — because of their proximity — are super fucking cute. Plus, there is something hugely romantic about telling the odds and the statistics to go screw, and just going for it.
The next day, my wife called and canceled the appointment. It felt like it made no sense, but somehow it made sense for us.
But we replaced one weight with another: The perpetual fear that any day, any minute, any second we’d lose one or both of the babies. What we absolutely did not want was a baby that had to be delivered at 22 or 23 weeks because the risk of complications when you have babies that early is too high, and the interventions required to save them are so invasive and painful. We reasoned that it would be better if we lost the babies than to deliver them too early, where they’d likely face great pain and either a painful death or a lifetime of complications. Each week, we’d look at the statistics, figure the odds, and try and determine what would happen to our family and what sort of quality of life we could expect if the babies had to be delivered that week. The whole thing was a Saw-like game of psychological torture.
But we made it to 28 weeks. The day after New Year’s Day, my wife was admitted into the hospital. She had an ultrasounds once a day and fetal monitoring every six hours. If it appeared that something was amiss, the doctors would have to deliver then. But even still, with monitoring every six or four or even two hours, you don’t know. You don’t know what could happen when no one is looking. The babies moved around a lot. Their umbilical cords were already tangled. What we hoped for was that the cords wouldn’t wrap so tightly around one another that circulation would be impeded or cut off.
Six weeks passed like molasses in a glacier. We fell into a decent, though miserable routine. My mother-in-law moved in with us (I cannot tell you how helpful she was during this time). I’d wake up, get the kid ready for school, spend the day writing about Anne Hathaway or Jennifer Lawrence or whatever dumb movie was playing at the multiplex, and at the end of the day we’d drive over to the hospital and hang out there for a few hours. It’s not the best thing in the world for a four year old to spend every day in a hospital, but it kept the family together, and the three of us even managed to have a couple sleepovers. We’d bring food so my wife wouldn’t have to eat hospital food for all three meals (it’s amazing how unhealthy and disgusting hospital food is, particularly given that it’s supposed to be for sick people or people growing babies). I wrote many posts for Pajiba and UPROXX while sitting in that hospital room, wanting to share the experience.
The people were around us were amazing. The nurses were sweet and kind, and the doctor who delivered the babies was a former artist who swore like a sailor and borrowed our documentary on Phil Ochs. She visited us daily, and we loved her profoundly. My wife barely had a chance to read a book during six weeks of bed rest because she had so many visits from friends, from family, from her amazing co-workers, visits that took up most of the day. The Pajiba staff were likewise terrific, picking up extra posts, sending along amazing care packages. You really never know how kind and generous people can be until you’re put in a position like this.
But, incredibly, we made it, and the babies were delivered by (mandatory) Caesarian section, at 34 weeks and 1 day, on Valentine’s Day 2012. As we had seen via ultrasound, the umbilical cords had tangled — when we saw them at delivery, they looked like blood-soaked ponytails with a big knot tying them together. The girls each weighed around four and a half pounds, and they were immediately put on ventilators. Despite two courses of steroids, their lungs weren’t quite ready for air. In a way, it was a nightmare scenario for a couple of pinko-hippy commies: A medicalized birth, ventilators, ultraviolet lights, tubes, and sensors. But in another way, given what we had come to understand was possible, it was the ideal scenario: They were both alive, as as more and more tests came back, it become apparent that there was nothing wrong with them besides simple prematurity. There would be no brain bleeds. No cerebral palsy. There would be no surgeries.
Then, magically, after three incredibly long weeks in the intensive care unit, our daughters came home, putting an end to one terrifying experience, and beginning a new, far more hopeful (and very exhausting) experience.
Today, those Valentine’s Day miracle babies turn one. But the hero of this story, of course, is my wife, Mrs. Pajiba-hyphenate, who carried the babies for 34 weeks, the first 28 weeks of which she spent throwing up, and that last six weeks of which she spent in a hospital bed, fretting and worrying in a panic-driven state of terror, who endured the emotional, physical, and psychological weight of carrying babies who were always one wrong flip away from sudden and unexpected death. Kubrick could not have designed a more twisted ordeal, but she came out of it, managed to maintain her sanity, and be the brilliant, loving, and nurturing mother to my children and the wife no one could deserve.
Happy Valentine’s Day.
In the Intensive Care Unit
On the Day they Came Home