My husband and I had been going back and forth for a few years about whether/when to have kids. He is enrolled in a PhD engineering program, which is being paid for by his full-time work with a large government science institution. I have a Master’s degree and teach part-time at the community college closest to our house. I also have type 1 diabetes, which I manage with the help of an insulin pump. It makes it easier to manage, but I still need to frequently monitor my blood glucose levels and administer insulin via my pump very carefully. I had been able to get my control tightened up in anticipation of being pregnant last spring and we began trying to conceive in May. By my birthday in June, I was pregnant.
This was to be the first grandchild for both my and my husband’s parents and they were beyond thrilled when we told them. In fact, my father-in-law was so excited that he immediately called his parents to pass on the good news. I was about ten weeks pregnant at the time (and no, I didn’t say he could). Because I have a younger brother and a cousin with Down syndrome, I wanted to have some early testing done with the expectation that if any genetic anomalies were found, I would strongly consider terminating the pregnancy. While I obviously was very eager to have a baby, I grew up with a younger sibling who is mostly healthy but cognitively low functioning. I knew the amount of resources that would be necessary to provide an infant with such needs a reasonable chance at a long and happy life would be difficult for my husband and I to provide. To be honest, we also wanted a cognitively normal child, as close to it as possible anyway, as I and my husband both felt like we wanted to be able to raise smart children. We are both employed with an ample combined income, but we also live four and a half hours away from our families – the closest are my husband’s brother and sister-in-law, about three and a half hours away. We would be almost completely on our own and would be someday responsible for my younger brother’s care as well. For the record, my husband and I are both big planners. We like to know what is going to happen ahead of time, and plan for different possibilities if we don’t have concrete data about what is coming.
At about twelve weeks we had first trimester screening, on the recommendation of a genetic counselor, based on my family history and my health. The test is a combination of a blood test with a nuchal translucency scan on ultrasound that provides a ratio of the likelihood of the most common genetic problems–trisomy 21 (Down syndrome), trisomy 18, and trisomy 13. We screened positive for at least one of the trisomies (screening positive means a higher than 1 in 250 chance of actually having it) and our genetic counselor recommended a new non-invasive diagnostic test that uses a maternal blood sample to determine if there are higher levels of trisomy-associated chromosomes from the fetus present.
The week between the blood draw and the phone call from our genetic counselor was one of the longest I could imagine. I spent a lot of time trying to find out what the specific findings from the first screening could mean. Much of what I was able to collect of other peoples’ experiences with such findings was a normal fetus, so I prepared to take the diagnostic test as evidence that the fetus was normal, full stop. When the test came back negative for all the trisomies, I was so relieved. I thought that meant everything was okay and that we would for sure be welcoming a cute little baby in late February or early March. I started looking for baby clothes with themes that didn’t seem ridiculous to me, registering, planning to paint and refloor the future nursery, and rearranging furniture with my husband’s help to accommodate this addition to our lives. I bought maternity clothes as inexpensively as I could (even though the maternity wear didn’t fit yet, my pants were well beyond fitting), and started talking to the fetus in my belly, even nicknamed it “Stormageddon” after a Dr. Who episode about a baby that called itself that. I could feel it getting more solid and more real in my stomach from day-to-day.
By early October, we had the big ultrasound scheduled that would potentially reveal the baby’s gender (though we were opting to not find out) and we were looking forward to getting more pictures taken of this baby that would become part of our lives. My mom was so excited she asked to have me scan any images we could and send them to her via email. My husband arranged to take the day off of work to do some looking around at car seats and strollers after our first-thing-in-the-morning appointment. On that Friday, we went to a fertility clinic/imaging center run by our practice and prepared to get good news. What they found was a barely functioning heart in an otherwise healthy and structurally normal fetus.
The specific name for the defect is called heterotaxy or isomerism and it is a defect formed in the third week of embryonic development. In this defect, the heart is completely flipped in mild cases, and has two of the same side in severe cases. Since each side of the heart has different functional characteristics, with the pacemaker on one side, often there is little consistency in heart rate and pressure. Because they couldn’t see how severe the defect was, we were referred to a cardiologist at a different location to have a fetal echocardiogram done for more information to be gathered. We managed to get an appointment about three hours after our initial ultrasound and went home to have a quick lunch first. Pretty much as soon as the doctor explained the problem that morning, I wanted to run away, to anywhere where there was someone who would assure me it wasn’t true, my baby was fine. I didn’t cry in the doctor’s office, but I cried the whole way home and all through lunch, and most of the way to the cardiologist. The cardiologist arranged to have a medical resident, a third-year, complete our echocardiogram. She was very distant through the whole procedure and seemed to have a hard time getting much of the information they needed. The cardiologist eventually had to come in and complete the scan. While in some instances heterotaxy can be fixed with surgery shortly after birth, our baby had already progressed past the point where surgery would prevent further decline. Its tissues were starting to fill with fluid (known as fetal hydrops, usually lethal by itself) and the heart rate was low enough that the lack of blood flow would start to prevent growth, and eventually stop altogether, very soon. The heart was so swollen that the lungs had not developed at all. The cardiologist doubted that it would be very long until I began to miscarry, and if by some remote chance I were to make it to term, there would be nothing to be done. As in many cases where there is a long explanation of medical terms and jargon, the doctor wrote all of this down as he described the issues he found – the resulting document was three or four pages long. Before he could even get to the end where he described the likely outcomes and his recommendations, I had to keep stopping myself from jumping in to ask for an end to this little life I was carrying. Since then, I have heard stories from other women where the decision to terminate had to be made by them after a great deal of consideration, about diagnoses that were much less clearly going to lead to a poor outcome. In this way, I feel lucky that I didn’t have any ambiguity in the diagnosis my husband and I received. It made the decision simple. I won’t say it was easy, the decision to end a life is never easy, but it was clear-cut.
From that point forward, things moved both quickly and slowly. The maternal-fetal medicine practice we were working with had a pregnancy loss coordinator who met with us for the rest of the afternoon and arranged the procedure, the disposition of the remains afterward, and hospice counseling for my husband and I. Initially we arranged to have the procedure done the following Thursday. The pregnancy loss coordinator rescheduled our appointment with a different provider after it became apparent that our insurance (which had covered completely all of our prenatal care) would not cover abortion services except in cases of rape, incest, or imminent threat to the life of the mother. (While this didn’t surprise me as I had taken the time to read through exactly what was and was not covered because of my own health care needs, my husband was furious to find this out, as was pretty much every person to whom we related this story.) We were again fortunate in that we were able to access a local standalone clinic, about fifty minutes from our house, which charged about a tenth of what the procedure would have cost through a hospital out-of-pocket. We had enough money in our bank account to be able to pay upfront. Again, this is not the experience of many women in our situation. In addition, the doctor who performed the procedure would have been the same person whether we had gone through the hospital or the clinic, which at least eliminated that worry and gave us some peace-of-mind about undergoing the procedure.
There are two different options available for terminations at the stage of pregnancy I was at –either a carefully managed labor-and-delivery in a maternity ward or a surgical dilation and extraction. The clinic only offered the surgical option. I should mention that I still went to work the week that this happened. It felt like the only place I had where everything still made sense, where I was still in charge, and where I could pretend for at least a little while that none of this was happening. I had very little patience for my students’ antics and excuses, but I still felt better when I was there than if I had taken time off.
The preparation for the procedure involved inserting small sticks of absorbent material that slowly expand to stretch the cervix open the day before the procedure. I found that it was very painful and impossible to find a comfortable position to sit/stand/lay down without lots of painkillers and heating pads. You are also supposed to take a heavy dose of antibiotics orally the night before– I forgot to do so and had to have the antibiotics via IV the next morning before the procedure. A couple of things we did while we went through this: we are big gardeners and had originally planned to give out jars of homegrown strawberry rhubarb jam at our baby shower. We decided to hand these out to the nurses and workers at the clinic as well as to the doctors, nurses, and secretaries at the hospital who took care of us. After the initial scan that showed the first indications of what problems we were going to have, I brought a batch of homemade cookies with us to the fetal echocardiogram and handed them out left and right to everyone we worked with, including the doctor they dragged in to sign the affidavit saying I wanted the abortion procedure. I’m not sure exactly why I did either of these things, but I am the person who will always bring extra food and drink when visiting, so in many ways, it’s who I am. What I do know is that no one forgot us and we still get nice second-hand thank-yous from folks whenever we encounter the people we met during this whole experience. Regardless of the food bribery, everyone who helped us or worked with us was amazingly nice and polite, and had only positive things to say about our navigation of terminating this pregnancy. My husband and I don’t know many people who live near us. We’re transplants from out-of-state, and we met more nice people with whom we’ve continued relationships in this whole horrible experience than we had in much of the previous years of living here.
Beyond the procedure itself, going to a clinic for this meant that there was a possibility of encountering protestors as we entered or exited the building. My husband was more upset by this prospect than I was. We saw only one protestor outside, on one of the three days we were at the clinic that week. He stayed for about twenty minutes on a blustery day before packing up and leaving. An observation my husband made that helped me know he was dealing with this situation really well was when he said that protestors like that are cowards. They have the luxury of choice as to whether or not they are going to show up –we don’t have that luxury of choice in making the most ethical decision we can.
Right before we went in the morning of the procedure, I had a moment of panic –what if we were making the wrong decision, despite all the evidence to the contrary? After this was over, our baby would be dead, but for that moment, it was still alive. We had seen so many pictures of this beautiful image with a ruined heart, between the original scans and the ones the clinic had to do for dating purposes. I didn’t want it to be gone. I knew we had to do it anyway, and that even if I didn’t terminate the pregnancy it would end with a dead baby, so I pulled myself together and got out of the car. It was pretty straightforward from that point on. The next day we had dinner with some friends who, the same week all this was happening, had had a baby girl. I actually really wanted to go. I wanted a chance to hold someone’s baby, sort of as proof that I wasn’t a jinx and because I still wanted to desperately to have one of my own, and holding someone else’s was the next best thing. We hadn’t shared yet with these friends what had happened to us so we had to rehash the whole thing for the first time. It was easier than it could have been and after we talked it through, they shared that they too had ended a pregnancy for financial reasons shortly before we had met them. Some women who have terminated for medical reasons feel very negatively towards women who terminate for non-medical reasons. I found exactly the opposite was true for me. Everyone who has to navigate this decision does so with the best appreciation of the consequences that they have available to them, and to pretend that women don’t truly appreciate why they are voluntarily ending their pregnancies assumes that women are not capable of making moral decisions. We all deserve to not be judged by people who haven’t been in our shoes, and who don’t want to imagine the depths of awful that their fellow humans deal with every day.
The days and weeks after our termination were impossibly hard. I remember crying every day for about a month, often in the car on my way home from work. We had the remains cremated and opted to place them in a teddy bear that sits on the headboard of our bed. For the first few months I took it out often and cried into its fur. When we traveled to visit our families for the holidays, I brought it with us and snuggled it between my husband and I every night. We put together a memory book with all the scans, all the literature we got from the clinic and the hospital, and the condolence cards we got. I still pull it out every so often. I bought three or four books about infant loss and tried to navigate the day-to-day reality of no longer being pregnant. Some things made it harder. I had a 17-year-old student who was five-months-pregnant with twins in one of my courses. Some things made it more bearable. We got some really lovely cards and phone calls from people among our families and friends who had experienced pregnancy loss; very few other people acknowledged our termination that way. Once I posted about the fact that we had had a loss on Facebook, many people expressed condolences, but I didn’t share the details that way. It’s strange –it seems like Facebook takes on this horrible power over those of us who have terminated pregnancies for medical reasons. It is a place where many of us maintain relationships that serve to buoy us through such an awful experience. But it is also where we experience impossible pain from watching other people navigate seemingly problem-free pregnancies, from having pro-choice messages thrust in our faces, and from rejection by friends and family who don’t seem to understand that we will never “just get over” this betrayal of our bodies and our trust in a rational universe (or a loving God). Many of us suffer a loss of faith that doesn’t seem to penetrate beyond our own beliefs to the sensibilities or the faith of our family or friends. It seems like only others who have had a pregnancy loss even have the capacity to have that conversation. Many of us don’t find divine meaning in this experience. The common turn of phrase for our dead babies is our “angels.” I never say that about my baby– we don’t know what happens after we die and as uncomfortable as I find the prospect, I doubt that the heaven we imagine is real. What we call consciousness and what we refer to as a “soul” requires our physical form to exist. More importantly, it requires our experiences and cognitive capabilities. If anything, before birth our babies were bits of potential, unique combinations of physical reality that could only become more conscious and aware (to varying degrees) as time went on and the biological process of gestation continued. After their removal from our bodies, the potential was extinguished, though our ideas of what they could have been never leaves. If it sounds like a clinical and emotionless description of what happened, it certainly doesn’t feel that way. I wish beyond reason that this never happened, that the baby my husband and I made could have survived in this world. I wish that the religion my fellow Americans seem to hold sacred didn’t dictate whether, or how, women and their partners are able to make impossibly terrible decisions like this. The only good thing I think that has come out of this experience is I am a lot less afraid of many things in my life. I’m less afraid to fail when the stakes aren’t life and death, and more willing to stand up for what I think is right. I’ll still say, though, that I’d leave the courage at the door if I could have my baby back.