Owen's Story: Part 1 (Trigger Warning: TFMR Pregnancy Loss)

On Wednesday, September 22, Justin and I went to our 20-week appointment to learn the gender of our baby. Our nurse told us it was a boy, and we were so excited. We talked about names, joked about how he would be Justin’s football buddy, started to make plans for our gender reveal on Sunday, talked about how our only niece, Emi, would be disappointed he wasn’t a girl, and imagined what his life would be like. Our plan was to go to the Cheesecake Factory afterwards to celebrate. While we were chatting, we didn’t realize our nurse had stopped talking. She suddenly said that she was concerned about his arms and legs and left the room to get the MFM doctor to take a look at the images. We joked about how ironic it was that 6-foot 4-inch-tall Justin, of all people, would have a short baby. However, when the doctor came in, we found out that it wasn’t just his arms and legs that were off. His chest was below the 5th percentile and there wouldn’t be enough room for his heart and lungs as he grew. They also thought his skull was starting to form incorrectly. If we delivered him to full-term, the best-case scenario was that he would live for a few minutes or hours, and then die in our arms. They told us it was called lethal skeletal dysplasia and it was a coding error when his cells were first dividing—a total fluke. Our hearts stopped and the tears started to come. He then left the room, and a genetic counselor came to talk with us about our options. She said we could terminate or go full-term, it was our choice. She also recommended doing an amniotic fluid test before we left the office so we could narrow down the options of what was happening to our baby. Justin had to do a lot of the talking, but we agreed to do the test and the doctor came back in the room to get the sample. They stuck a needle through my stomach to my uterus as I was crying over the loss of my baby and from how painful the procedure was. I kept my eye on the ultrasound throughout the entire procedure. I watched as the needle came close to my baby, I didn't want them to accidentally hurt him. In the end, they pulled out two small vials of fluid. Then we had to go get a blood sample down the hallway so they could distinguish my DNA from the baby’s. We walked in silence as tears flowed down our faces, fogging up our glasses and falling into our face-masks. We left the hospital brokenhearted and lost.

This 3D ultrasound is the closest we got to see our baby's cute face. I love his little nose and fingers.

The next 24-hours were indescribable. I went from screaming to sobbing to silently crying to pacing around the apartment to staring off into space, losing track of time. We called our parents and cried on the phone with them. I sat in the nursery we had started to prepare for our baby and looked at the cradle that was ready for his due date in February. I held the blanket and burp cloths I had sewed for him when I first found out I was pregnant. I cried over the ultrasound pictures that we had and mourned the loss of my baby that wasn’t even born yet. I researched his condition, what a termination would entail, and desperately looked for stories from other women where they didn’t end up needing to terminate or the baby didn’t die after being delivered—there were none. I kept asking myself why this had to happen to us. I couldn’t come up with an answer. That first night, I got 3 hours of sleep.

Over the next few days, I cried so much that I kept getting bloody noses each time I cried. Our genetic counselor called us and asked what we had decided to do depending on how the test results came back in the next few days. Our choices were to stop our baby’s heartbeat and terminate the pregnancy so he wouldn’t suffer when he was born, or to let him be born on his due date but suffocate and die as soon as he was born. We were essentially deciding how our baby was going to die and what would be the most peaceful for him. It was our first and last choice we got to make as parents, and we decided it would be best to terminate the pregnancy. There were moments where we were able to feel at peace with our decision and moments where we couldn’t bear the thought of what was going to happen. I had to email co-workers and parents of the students in my class to let them know why I was absent for 3-days, what had happened to our baby, and why I would be gone in the near future. I set up a time for our school counselor to chat with the class and began planning my bereavement leave for when the procedure would take place. I tried to plan lessons for the following week and grade papers to distract myself. Family stopped by to bring us meals and talk with us. We decided to take a maternity/memorial photoshoot so we could have evidence that we were pregnant with this baby before he left us. We also planned a cruise to go on in December to give us something to look forward to once this was over and done with. Even with all of this, the emptiness, anger, and sadness never left. We were losing our first baby before we had the chance to meet him.

During one of my late nights crying in the nursery, I decided I wanted to name him Owen and call him that before and after he was gone. I didn’t want to have any regrets, so I also decided that I was going to make the most of the time I had left with him and still treat him like I would have if the pregnancy went according to plan. He was still my baby, and I was still his mama—no matter what happened. I made sure I ate three meals and snacks, kept my blood sugars in range, talked to him, touched my belly, and sang to him. For some reason, I also started to feel him a lot more than I had up to this point. I’m not sure if it was because I was stressed and it was impacting him, a blessing, me being hyper-aware of him, or a coincidence. I still couldn’t watch his ultrasound videos without crying though.

I started to put together a box of items from this pregnancy that were sentimental to me. Our first positive pregnancy test, pregnancy books I had bought, cards from family members, paperwork from the hospital, a binky I had bought for him, a “mama” sweatshirt I had ordered, and the burp cloths I had sewn. I kept out the blanket I had sewn for him so I could sleep with it at night, and I saved a burp cloth to send with him after he died so I could feel like I wasn’t sending him away with nothing as his mother. We also started thinking of what we would like to have done with his remains. He could be incinerated at the hospital, or they could give us his remains to cremate or bury.

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