TFMR: What now?
I will never be able to adequately describe the thoughts and emotions you experience after being told you are carrying a child who isn’t going to survive. You know how waking up becomes a battle after you have suffered a loss or a trauma? You open your eyes in the mornings that follow, and for a split second you think maybe it was a dream. That’s what every single moment felt like as we road the elevator down to the first floor, walked to the car and drove home from the doctor’s office that morning. In 15-second intervals, my brain would convince me this wasn’t happening, just to then remind me that I was awake, and this was real, and my baby was dying. Vinnie and I were both nearly speechless on the car ride home. My mind spun in circles as it tried over and over to process the news that we wouldn’t, in fact, be decorating a nursery this month. We wouldn’t be welcoming our son this fall. We wouldn’t be celebrating Christmas with a newborn. In a split second so many things had changed.
One blaring thought kept inserting itself into the downward spiral of my mind…we had to tell our families. Our parents would be devastated… I couldn’t even fathom how and when we would break the news, but I knew it had to be sooner rather than later. Walking into our house felt like a bad dream…a nightmare. I poured myself a mug of tequila, and sat on the couch - ready to cry, to drink, to die it felt like. How could we possibly go on? Vinnie went outside to call our parents, a task I will be eternally grateful to him for taking on. I couldn’t talk. I couldn’t text. I couldn’t live, at least not in any similar sense to the way I had just hours before. Vinnie texted my sisters-in-law and my best friends. He handled all of the communication. He was truly amazing.
In the hours that followed I tried to understand how we had gotten to this place. This place of having to choose between terminating this pregnancy, or going full term and giving birth (a process that already terrified me to my very core) to a baby, who would either be stillborn or live only moments past birth. I knew I couldn’t do that… I knew I couldn’t carry Archie for 22 more weeks, knowing he was going to die before I ever got to bring him home. I knew I could not go through hours of labor knowing I would never get leave the hospital with him. But, how could I agree to the alternative? How could I agree to kill my child? I know people feel differently on this issue (and I respect everyone’s right to choose), but for V and I, we considered this child a living being the moment the test said “pregnant”. We had seen his little body move on the ultrasound; we had now heard his heartbeat. He was very much alive to us, and termination just felt like a fancy word for murder.
There was no good option here. Yet we had to make a choice. The agony of that first 24 hours was unlike anything I have ever experienced. The following morning we returned to the doctor’s office, which was an extremely triggering experience in and of itself. All I could think was, “When we walked in here yesterday, we had no idea how much everything was about to change.” We met with a genetic counselor who kindly and patiently explained our options. First, we could do some additional genetic testing to confirm if V or I were carriers for anything that could potentially lead to this situation again. I felt like the scum of all mothers even thinking about future pregnancies while Archie was still alive in my stomach. Yet…I needed to know if this could happen again. We agreed V and I would both have our blood taken and sent off for evaluation. We were told Archie’s condition was most likely a completely random occurrence, which made me feel better, and infuriated me all at once. This didn’t feel random. It felt like God purposely allowed this to happen to us. It felt like He had signed off on this cruel fate. But…there was a glimmer of hope. Maybe I was naive, or maybe I was in denial, but when I heard the words “clinical trial” my heart grabbed on to a shred of hope. I asked for more information on the trial - the results, success stories, qualifications, etc. There were no success stories, yet. My heart sank again…this trial seemed anything but a solution, but I still needed to know more. The genetic counselor told me what she knew about the trial, which understandably wasn’t much, and she printed off some information for us to review. There were several locations around the country where the trial was taking place. The nearest to us was in Maryland - Johns Hopkins.
As my mind began racing, reaching for hope, we were escorted back to an ultrasound room. We had been advised a second ultrasound was needed to confirm the horrible findings of the day before. Once again, I held V’s hand as the ultrasound tech squirted the warm liquid onto my stomach and moved my seat into a leaned back position. There it was again….Archie’s heartbeat. What should have been such a wonderful sound, felt like the equivalent of nails on a chalkboard. That little beating heart, reminding me that my baby was alive, but that he was going to die…and the decision of when was up to me. That is a level of cruelty I would not wish on my most hated enemy. The results of the second ultrasound confirmed those of the first.
As we sat, waiting to have our blood taken, I read every word of the pages the genetic counselor had printed out for us. I HATE having my blood taken in the first place, but today it was extra painful. I wasn’t having my blood taken to find out the gender, like I had done several weeks prior. I was having my blood taken to see if there was something wrong with me…something about my body that could potentially put us in this same horrible situation again.
When we got in the car to drive home, we had our first real opportunity to discuss the clinical trial. A discussion that we would spend the remainder of the day agonizing over. In North Carolina, we would not be able to terminate the pregnancy after 20 weeks, 6 days. So, in addition to making an impossible choice, we had to make it fairly quickly. Plus, we now had a third option to consider, if we even qualified for the trial.
