“Don’t research. Make this decision from the heart,” the doctor said. How can my husband and I possibly listen to this advice when we are scientists, and scientific research is what we do for a living! And we are about to make the hardest decision of our lives: Whether or not to end our unborn baby girl’s life?

Three years before we were faced with this terrible decision, we had a baby, our first, a beautiful healthy little boy. As with many pregnancies, all went well, and we took for granted how easy pregnancy can be. Our minds were not preoccupied with fears of miscarriage or birth defects, rather, we were just excited throughout the pregnancy, eagerly waiting to meet our baby. We didn’t know whether we would like being parents, but over time we fell in love with our son and found that our love for him continued to grow. Our son was incredible, so we decided to try for another a couple of years after the first. 

After a few months of trying, I got pregnant once again, and the due date ended up being very close to our son’s birthday. I felt guilty for being pregnant with a second baby so close to my son’s birthday, such an important day to our family. But the guilt quickly faded, and as the 11^th week of pregnancy came around, I started to bleed, and had my first miscarriage. I was devastated and hid my miscarriage from the world. Only my family and select friends knew. During that time, the darkest I thought I’d ever have, I blamed myself for the miscarriage. I’m a chemistry professor, and I wore proper personal protective equipment; gloves, goggles and lab coat, and I allowed myself to briefly work with chemicals in the laboratory, instructing my research associate on how to make a particular preparation. The chemicals included the solvent toluene, which I knew could be inhaled, and according to some sources online, may potentially cause any number of outcomes, including miscarriage.

 I kept thinking that surely this thoughtless event must have done it, because otherwise I was so careful! I was eating well, taking prenatal vitamins, avoiding even caffeine and staying healthy, and other than that one day, avoiding laboratory chemicals. For comfort in this dark time, I delved into social media and websites looking for stories of rainbow babies, which is a term I learned is commonly used for a healthy baby that’s born right after the parents have a pregnancy loss. I read all the explanations, and especially the startling statistic that’s hard to wrap your head around, that one in four pregnancies ends in miscarriage, and worse, that it’s closer to one in three as you pass the age of 35.  Nonetheless, I decided to try again soon after I stopped bleeding. 

Four months later, I was pregnant again. I had not expected to be pregnant so quickly. But with this pregnancy we decided not to get excited. In fact, we decided to not talk about it at all. We were both scared that it would end with another miscarriage, and it seemed logical that if we did not get excited about the baby then it would be easier for us to cope if we lost it. Just a few days before the 12 week ultrasound, I started to bleed, and I panicked that we were having another miscarriage. We went to our nurse practitioner, a smart young woman, and she concluded that the blood was from a yeast infection. She then asked us whether we would like to hear our baby’s heartbeat for the first time. I knew there was a chance that it might not work yet, as the baby was still very young, but I agreed. She had no trouble finding the heartbeat, and we felt incredible relief, especially when she proceeded to tell us that the odds of losing a baby after hearing the heartbeat go way down. We felt like that piece of information was our permission to finally start to get excited about this pregnancy. Our excitement would be short lived. A few days later the fetus turned 12 weeks old, which means tests.  We were scheduled for the standard 12-week ultrasound and then another ultrasound because I was now 35 years old. This second ultrasound was scheduled for one week after the first ultrasound, and a visit to the nurse practitioner for the results was scheduled for a couple of days later. 

My husband and I were so excited to see our baby for the first time at the 12-week ultrasound. I was so thrilled to see my rainbow baby for the first time, that I hadn’t noticed the differences in this particular appointment in comparison to my first child’s 12-week ultrasound just a few years earlier. At my first child’s ultrasound, I remember him being so energetic, bouncing everywhere within the womb, forcing the technician to constantly turn and switch ultrasound sensors to try to get useful measurements. But this baby was calm, just lying there, likely sleeping, or a testament to their subdued personality. I watched as the technician was performing a scan of what seemed like all the body parts, and it all seemed good. What I didn’t notice however, was that the ultrasound technician kept going back to re-measure one particular area of the fetus. I had no idea that at this young fetal age, the thickness of the tissue at the back of the neck of the fetus was a very serious measurement. In fact, having a thickness of 1 or 2 mm thicker than average is a serious indicator that something is very wrong with the fetus. But I didn’t know this yet, and the ultrasound technician didn’t say anything during or after the scan, knowing it’s the doctor’s job, not hers, to deliver the outcome of the scan.

Since our doctor’s visit wasn’t until the following Thursday, we didn’t know the results from that first ultrasound, and we spent a blissful week talking about our baby. The second ultrasound, scheduled on a pleasant sunny Tuesday morning in July was routine, or so I thought.  The technician asked me a few questions beforehand, one of which was whether I had drank alcohol during this pregnancy. Before I knew I was pregnant I had a few glasses of wine and I admitted to it. I had done the same with my son but was never questioned about it. After a few ultrasound measurements of just the neck thickness, the technician brought in the doctor. The doctor performed a few more ultrasound measurements of the neck and then the heart, and then she asked me: “how much do you know?” 

I just started crying. I knew nothing, but clearly there was something wrong. The doctor explained that our baby’s neck measurements were much thicker than average indicating that our baby has a cystic hygroma. Furthermore, the doctor additionally suspected heart defects, but she couldn’t be sure due to the young age of the fetus. She then told  my husband and me that we had three options: The first option was to continue the pregnancy and prepare to have a child that will likely die in utero or during their first year or will have disabilities that could range in severity. The second option was to perform more tests, and the third option was to terminate the pregnancy. She said: “Most couples in your circumstances terminate the pregnancy at this point,” and then she looked at us, seemingly awaiting our decision. 

The idea of making such an important decision right there froze us in our tracks. The doctor told us she was available in the early afternoon that day (for a termination). She told us to take a walk, think about it, and come back in a few hours. My husband asked her to write the baby’s condition (cystic hygroma) on a piece of paper, and I’m so thankful he did because cystic hygroma was not a medical term I’d ever heard, but it has become a medical term that I will never forget. With that piece of paper, the doctor advised us to resist the urge to look it up, and instead to make this decision from the heart.

We spent the next few hours walking through a park near the hospital, angry and crying. Internet searches seemed to confirm that a fetus with cystic hygroma indeed leads to terrible outcomes, most often death, sometimes severe disability, often a severe heart condition, and very rarely a good outcome. We quickly realized making this decision uninformed was just not something we would be willing to do, so we settled on performing more tests, to give us more time to research the condition, and because we were not prepared to lose our rainbow baby just yet.

The initial tests were genetic, and revealed that our baby was a girl, and that she tested negative for common genetic conditions including Down, Edward or Patau syndromes. At that moment, I had hope, since the tests did not indicate a particular genetic disease. I thought wow, this was a baby girl, we already had a boy, and it would be great to have a little girl, my husband had always wanted a girl. But then I really dug into the research, reading all the medical papers I could find on cystic hygromas, and that’s when I lost hope. Although a fraction of babies with this condition are fine, that fraction tended to be in the single digits, and instead the research showed that the thickness of the back of the neck correlates well with the severity of the disability and unfortunately, our baby’s measurement indicated she would likely be born brain dead or with no muscle function whatsoever. 

One thing missing in the above narrative is the anger we felt at having to decide this ourselves. The way I always understood it is that with medical dilemmas, you seek the advice of one or several doctors, and if you trust modern medicine, you take it, because they are the experts, not you. But for me and my husband, presumably because of the way the law is structured, or how the system works, or some combination of ridiculous factors, somehow, we didn’t get advice, we just got choices. And the choice we got was a terrifying choice no one should ever have to make, whether to ignore the small probability that our baby might be fine, and to end her life, saving her and our family from the other possibility which dominates the probability, that she will likely either die in utero, or die before she turns 1, or have an incredibly and severely limited life. 

During these weeks of tests, talking to doctors and a geneticist, and “choosing,” I felt like I was living a nightmare. I needed to get out of this nightmare and find peace with whatever decision we were about to make. My family is Catholic, and while the church was against abortion, my family never discussed it, so I was afraid to seek advice earlier. However, I finally opened up, and I’m glad I did, because I’m not sure I could have made the choice without their support. We decided to terminate the pregnancy at 17 weeks. I had never known the expressions “medical termination” or “termination for medical reasons,” but now I was part of this exclusive club and had to make another decision, this time about how to end our baby’s life. The possibilities included being induced and letting the baby die in my arms, or a procedure known as dilation and evacuation (D&E) where I wouldn’t get to see my baby. I couldn’t face seeing my baby die. What I was doing seemed so shameful and I felt and still feel so guilty for my decision. I had the D&E performed and afterwards, all I wanted was to see and hold my son, and cry.

To help us grieve, we named our baby girl while walking on the beach the day after the procedure. We chose Summer because she was supposed to be born in the wintertime with a due date of January 10, but she came much earlier, in the summertime on August 3rd. We also liked the name Summer because it was from a cute romcom we had watched early on when we first started dating called “500 Days of Summer.” It is a movie about a man who reflects on his relationship with a fun and carefree woman named Summer, who leaves him after 500 days. The name Summer seemed fitting for our experience, but our Summer was only with us for 120 days and I had abandoned her, not the other way around.

To further help me grieve and seek forgiveness for what I had done, I went to confession at the Catholic church where my son was baptized. I knew the church was against abortion, but I needed to seek forgiveness hoping this would help me heal. I don’t know about other people’s experience, but in mine, the priest was very gentle and loving. He told me that I am being very hard on myself and my decision, and he hopes that one day I can forgive myself just as God has forgiven me. 

A few months went by, and we decided to try again. According to the geneticist we talked to, the chances of this happening again were very slim, and the geneticist told us he knew many couples who were able to conceive a healthy baby after such circumstances. We got pregnant again and this time, the baby had a similar due date to our first miscarried baby’s due date and my son’s birthday. During this pregnancy and just prior to it, I did not use any chemicals in the lab, I did not drink alcohol and I exercised every day. I was in great shape physically, but it didn’t matter because at eight weeks pregnant during my first lecture to university students in the winter term I started to bleed. The bleeding was so severe that my pants became completely saturated in blood, and I needed to go to the emergency department. There was a complication with the miscarriage, some tissue was blocking my cervix and required surgical removal. 

At this point, I hated my body. Not only had it been home to three failed pregnancies, but it now couldn’t even properly miscarry. I asked the doctors if there was anything they could do, perhaps tests to see why I’m having such difficulty conceiving a second healthy child. They all told me there is nothing that can be done unless I experience three miscarriages in a row. Technically my second loss was not a miscarriage, even though I had so badly wished it would have been. The doctors and geneticist all said this was just bad luck, a series of unfortunate events. 

I hated hearing that it was bad luck. Surely there was a scientific reason for all these issues. Then I was given a book from a colleague about miscarriages. The book was anecdotal, but also told what is currently known scientifically about miscarriages. It was from this book that I learned that the chance of a miscarriage can be intimately linked with the time it takes sperm to fertilize the egg. The doctors were right, my husband and I had bad luck, there was no way we could control this aspect of conceiving a child. 

After much internal debate, and discussions with my husband, I decided I wanted to give it one more try. My husband was very hesitant to put me through another loss, but this would be our last attempt. I then became pregnant with a baby whose due date was January 10, the same day as Summer’s due date. This coincidence made me very stressed and anxious, but we learned early on that this baby was a boy, not a girl, and somehow this difference perhaps meant that we were not going to live through the same nightmare twice. At 12 weeks we learned that our baby boy’s neck thickness was within the range measured for a healthy baby. The 20-week anatomy scan showed no sign of birth defects, and an additional fetal echocardiogram performed due to our history went well and an additional 32-week ultrasound showed that baby was growing really well.

A day before our baby boy’s and Summer’s due date, and exactly a year after my second miscarriage started, our second healthy baby boy was born. My baby boy is now only three weeks old and he’s perfect in every way. He’s named after me as a testament to my strength and willingness to keep trying. I hope he will also be as strong one day. And as for Summer and the other two babies that we lost, I think about them every day and still cry from time to time. But I am comforted to know that from losing them came the greatest gift, one I am not sure I deserve, my second healthy son.

—D. Tokarz