Owen's Story (Part 4): Trigger Warning Pregnancy Loss, TFMR

That same week, we also went to a birthday party for one of our nephews. I thought it would be good for us to be around family and kids. Mostly because I have a tendency to run away from uncomfortable situations, and because I also wanted Owen to have a chance to be around everyone who loved him before he was gone. 

At first, I was fine, but as I watched my siblings interact with their kids, my heart began to sink. I wouldn’t get the opportunity to carry Owen on my hip, to soothe his tears, to watch him play with cousins, or to joke around with him. I was jealous that their pregnancies had all gone how they were supposed to, and that their children were happy and healthy. I kept imagining what it would be like if Owen were there. What would he be doing? What kinds of games would he like to play? Would he be shy or outgoing? Who would be his favorite cousin? Would he cling to us or go off on his own? Would he like caramel ice cream or cookie dough ice cream? Everything came to a head when the grandkids got in a picture together. Even though Owen was alive inside of me, he would never get to be in that picture. His cousins would never know him and everyone outside of our family of two would forget him eventually. It would be like he never existed. It was painful to walk away from where they were taking the photo. I wanted Owen to be included, but it wouldn’t make sense for me to stand there with all the kids.

I couldn’t decide how I wanted everyone to treat me. My brothers and dad hadn’t seen me since we told them the bad news, and I could tell they weren’t sure what to do or say to show that they were worried about us. Everyone was trying to gauge how I was doing the whole time we were there. I wasn’t sure if I wanted people to pretend like everything was okay or if I wanted them to walk on eggshells around me. I guess uncertainty should be something I’m comfortable with now. Aside from when I was crying, I felt empty most of the time, like a shell of myself. I still don’t know how I’ll ever be completely okay again. 

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On Wednesday we started the first day of the termination procedure. We drove out to the MFM office in Murray and met with a nurse and the doctor who would be performing the D&E. They asked if we had named him and we told them his name was Owen. They wrote it in quotation marks on the paperwork for the doctor. Those quotation marks really bothered me. His name was Owen and will always be Owen. It wasn’t a nickname I gave him or an imaginary friend’s name. It was my child’s name. My son’s name. 

We had to sign paperwork that the state of Utah requires--the nurse actually apologized to us as she had us sign document after document since most of it didn’t apply to our situation. The wording on it was specifically intended for elective terminations/abortions. It’s almost like the state didn’t even realize that people like us would be in this terrible situation where we were terminating our baby at 22 weeks not because we wanted to, but because we had to. Despite this, it was still considered a "late-term abortion." (Only 1% of all abortions/terminations happen after 20 weeks, and most of them are wanted pregnancies. https://www.kff.org/womens-health-policy/fact-sheet/abortions-later-in-pregnancy) They also told us that since we were terminating the pregnancy past 20 weeks, the state required us to have a mortuary handle Owen’s remains instead of the hospital. However, they still wouldn’t grant us a death certificate for Owen because we were terminating. (The state of Utah does not provide death certificates to terminated babies at any stage in a mother’s pregnancy because they technically count as late-term abortions, but if the mother delivers naturally with no induction and the baby dies, if the baby is still-born, or if the mother miscarries, they will provide a death certificate past 16 weeks.) They were forcing us to acknowledge that Owen was a living baby with a soul by making us bury or cremate him, but in the same breath, telling us his life really didn’t matter enough to be documented because my body didn’t kill him naturally. It was cruel. We were forced into choosing how and when Owen would die. We felt we were making the most-loving choice for him by ending his suffering before it began, and not having his only moments outside of my body be gasping for air and choking. When I pointed this out to the nurse and doctor, they were just as upset and confused by the state laws as I was. I was angry for my child, but there was nothing I could do about it. 

After signing the paperwork, they had to watch me take a progesterone blocking pill to soften my cervix for the procedure the following day. Progesterone is what strengthens the cervix during pregnancy and since they were going to forcefully open my cervix on Thursday, they needed it to be pliable so it would be less painful for me. Once I took the pill, there was no going back. The process had already begun. We talked about the big procedure on Friday where Owen would be taken out of me. There were risks involved--they could accidentally puncture my uterus, my cervix could be damaged, I could have placental remains left inside me that would come out during the following week, and my blood sugar would need to be closely monitored since I was technically going through labor and I would need to fast until the procedure. I asked about the risk of pieces of Owen being left inside me since they would be breaking apart his body and sucking him out during the procedure. The doctor said that it was highly-unlikely and that they would have an ultrasound on my belly during the entire procedure to make sure nothing was left behind. 

After leaving the office, we had to go over to a different building to get a Covid test in preparation for Friday. Ironically, I had been feeling cold symptoms since Monday and I had a coworker out with Covid. It was like someone in the universe hated me and wanted to kick me while I was already down. I cried in the car as I tried to spit in the sample tube. I just wanted my baby. I didn’t ask for any of this to happen. I didn’t want any of this to happen. I couldn’t change my mind, I couldn’t go back, we were locked in to the next three days of the termination. 

Owen's Story (Part 3): Trigger Warning Pregnancy Loss, TFMR

On Wednesday we got a call that they could squeeze us in for a last-minute appointment to get a second ultrasound with a different doctor so we could verify what they saw the week before. Overall, the appointment was a lot better than our first appointment at the MFM clinic. The ultrasound nurse took some 3D photos of Owen and we got to see his cute face--he was sucking on his thumb. He was stubborn again during the ultrasound and they had to push him around to get the images they wanted. Once the nurse left the room, I felt a ton of movement from him in my stomach. I think he was very put out by the experience.

We then had the doctor come in to go over our ultrasounds with us and do some more of her own. She took over an hour examining the new ultrasound pictures to make sure all the measurements from last week were correct. His head, hands, feet, and stomach were all the right sizes for 21 ½ weeks of gestation, but his arms, chest, and legs were still behind by 5-6 weeks. His ribs were also short and they didn’t connect in the middle like they should. His thigh bones were curved like old-fashioned telephone receivers. However, his skull wasn’t clover-shaped like they told us the week before. We finally had a tiny ray of positivity. Because of these measurements and observations, she told us he still most-likely had Thanatophoric Dysplasia Type 1 (also known as TD Type 1, a lethal condition), but we wouldn’t know for sure unless we waited for the test results to confirm the diagnosis. When I asked about the possibility of dwarfism or Down-Syndrome (both share some common features of what she noticed in Owen), she said it wasn’t very likely; but again, we wouldn’t know for sure until the test results came back. She also told us that even if we had gotten genetic testing done earlier in the pregnancy it wouldn’t have made a difference. Skeletal dysplasia doesn’t show up on those kinds of tests. The nurse and doctor complimented us on how well we were handling things, but we had already been through the worst the week before. We were numb to the bad news. Traumatized and miserable, but numb. 

After seeing Owen’s face and knowing that his skull was forming correctly so far, I began to feel more open to delivering him closer to full-term, even if he would die. I wanted to hold him and see his face. I wanted to say goodbye. I wanted him to get a birth certificate or death certificate--depending on how the delivery went. Because of this, I didn’t feel as confident in my choice to go with a D&E, especially if we weren’t going to get definite test results in time like we were first told. My concerns with delivering him shifted from being afraid he would die in my arms to what if he lived? If he didn’t have TD Type 1, what type of skeletal dysplasia would he have? Would he have any quality of life if he miraculously survived delivery and he was able to breathe beyond his first minutes or hours? Would it be more loving on our end to ensure he didn’t have to suffer at all by terminating the pregnancy before he could be born? Would he resent us if we chose incorrectly? Would it be painful for him to suffocate and die after being born? I don’t think anyone understands how excruciating it is to have someone else’s life in your hands. Owen has no say in any of this. We have to use our best judgement as his parents, even if that judgement ends up being wrong. 

Our genetic counselor called us later that night with some price estimates for D&E and delivery in Utah. Since our insurance wouldn’t cover any form of termination, we would pay for it out-of-pocket. However, the hospitals have a discount system for uninsured individuals. They take 25% off the price and then if you pay in full before you are discharged, they increase the discount to 40% off the price. So, a hospital D&E would cost $7,000 with those discounts. The same would be true with a delivery as well. It was nice to not be so worried about finances no matter what our decision was. The test results would be back mid-week next week at the earliest, and in two weeks at the latest. We decided we wanted to at least wait until next Wednesday before making a choice. The test results might not be ready by then, but we could have more time to wrap our heads around what we would like to do and make sure we were truly making the right choice. In a way, it was a huge relief to have more time to make our decision instead of having to decide by the weekend. I wasn't mentally ready to terminate the pregnancy that soon. I guess I probably would never be ready for it. How could I be?

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On Monday we finally heard back from our genetic counselor with our test results. Owen was positive for TD Type 1. His life expectancy if he was born full term was minutes or hours. He would have major, lethal physical complications no matter what we chose to do. We couldn’t put off the inevitable anymore and we weren’t shocked by the news. We had already been expecting and bracing ourselves for it for the past two weeks. In a way, we felt some relief because the doubt in our minds could finally go away. It really was the worst case scenario, there was nothing else we could do. 

We decided to plan on beginning the termination on Wednesday or Thursday since it was actually going to be a three day process instead of a two day process because of how big Owen was, and far along I was. We were hoping to start the three day process on Thursday so we could celebrate our 5-year wedding anniversary on Friday with Owen. We also didn’t want our anniversary to be forever tied to the worst day of our lives. The first day of the termination, I would be given medicine to force my cervix to open, then on the second day they would stick laminaria in my cervix to continue the dilation process. The last day would be the termination procedure at the hospital. 

I emailed student parents and coworkers, found a sub for most of the days I would need off, and began thinking of what my plans would be during the 3 weeks I was taking off. It was so hard to wrap my head around it all though. It didn’t feel real. I knew what was going on, I had seen the ultrasounds, but I had also been feeling my baby’s kicks and movements. I don’t think it had sunk in completely, and the entire day felt like an out-of-body experience. We were only 4-5 days away from losing Owen. A few nights before, I had cried to Justin about how scared I was for Owen and the procedure. I was scared of how much it would hurt to get my cervix dilated. I was scared about potentially waking up mid-procedure and seeing/hearing things I didn’t want to. I was scared for Owen. What if he felt his body being pulled apart? What if they weren’t able to cut his umbilical cord before the termination? What if he didn't agree with our choice? How would he feel towards me? Would I really be able to live with the weight of my decision to end his life before he was born? Would I always feel as guilty as I do now? I still felt this way deep down inside of me, but I think my brain was trying to protect myself. I couldn’t focus on all these fears and worries right now. I couldn’t handle it. I still had time with him before he was gone. 

Owen's Story (Part 2): Trigger Warning Pregnancy Loss, TFMR

 The termination procedure we felt most comfortable with was called a D&E (dilation and evacuation) and it would take two days. According to what I could find on the internet, the first day of the procedure would consist of doctors forcing my cervix to dilate since I wasn’t ready to deliver the baby. Then we would come back the next day, they would knock me out, stop Owen’s heartbeat, and vacuum him out of me in pieces. (Each time I think about this, I cry. It sounds terrible.) We also had the option of going into labor to deliver him like we would if he were full-term, but Justin and I both didn’t think we had it in us to go through the trauma of that and not have a baby to bring home with us. With both procedures, I would go through post-partum as if I had delivered him normally. My milk would come in, I would bleed, the hormones would kick in, and it would take a while for my stomach to go back to normal.

Going back to work on Monday was gutting. Justin came with me for the first hour while our school psychologist talked with the class. I also had to have a quick talk with the students about what was going on. I told them that my baby was sick and would have to be born early. I also said that he wouldn’t be alive for very long. Because I was doing this, I would probably be gone for a few weeks before I came back to be with them. One student asked me if I had asked God for help and another asked me if my baby was alive or dead. The day went by smoothly and I was able to fake it for the kids. I also had a pretty good night once I got home—it was the first semi-normal night we had had since our appointment. Right before we went to bed though, I started to cry thinking about what Owen could have looked like, what kind of life we could have had with him, and who he could have been. I thought about what it would have been like to hold him and breastfeed him. To wake up in the middle of the night to his cries. To see Justin care for him and play with him. We wanted him so badly that our future felt hopeless without him.

Tuesday was harder than Monday. I didn’t sleep well the night before because I kept running through different delivery scenarios in my head. I got a call from our genetic counselor and she had bad news. Utah law did not allow for clinics to stop Owen’s heartbeat before the termination. The best we could do is have the D&E doctor cut his umbilical cord so the blood flow was cut off from his heart before he was vacuumed out. However, they couldn’t guarantee that they would be able to do this because it was all a matter of how he was positioned inside me at the time of the termination. I wanted to scream as I was talking with her on the phone. There really weren’t any choices for us—we kept getting cornered into inhumane and difficult situations where we felt we were not putting the well-being of our baby first. I already didn’t want to terminate the pregnancy, and even more than that, I didn’t want his last moments to be painful or agonizing. She then told me that I only had until 24 weeks gestational age to terminate Owen with a D&E procedure. I was already almost 22 weeks along at this point. Our test results also wouldn’t be back for another week or two because they were having a hard time getting a large enough DNA sample from the amniotic fluid. We were doing everything we were supposed to in order to ensure this was the right decision, but there were so many things out of our control that made the process overwhelming.  

She also told me that our insurance (PEHP) would probably not cover the termination since a fetal termination (even when the diagnosis is lethal) is technically a late-term abortion. We could potentially pay up to 100% out-of-pocket to terminate the pregnancy before his delivery date or wait until 32 weeks (the acknowledged viability gestational age in Utah) at the earliest to be induced and be charged the insurance price for labor/delivery (about $10,000). On top of that, we only had 3 choices for D&E to pick from—each of them nothing like what we had expected or wanted for our baby.

The first option was to deliver at a clinic in Utah. If we chose to do this, I could be knocked out and his umbilical cord could potentially be cut so he could die before termination. The drawback with this choice was the time limit we had to work within (two weeks to get everything sorted out—we might not have his test results back in time to verify what condition he has, and would instead have to use a second ultrasound as verification), his heart wasn’t guaranteed to be stopped, we only had until 24 weeks gestational age, and we didn’t know how much the procedure would cost with our insurance.

Our second choice was to go to Planned Parenthood. They wouldn’t be able to knock me out for the procedure, they also couldn’t stop his heartbeat, but we could save some money if we were worried about that (it would “only” be $4,600). However, they only offered D&E terminations until 22 weeks gestational age (which I was just about to reach in a few days) and we couldn’t use test results to verify our decision.

Our last choice was to fly out to a clinic in Boulder, Colorado. Colorado allows fetal heartbeats to be stopped prior to termination, but the procedure wouldn’t be covered at all by insurance since it counted as out-of-state care. We could wait longer for the test results to get back to us because they have a longer termination window than we do in Utah.

I came home the angriest I had ever felt since finding out about Owen’s condition. I was angry that the so-called “Pro-Life” politicians in my state were making it harder for me to treat my unborn child’s life with dignity and love. I was angry that I was being punished for something I didn’t ask for, didn’t look for, and never wanted to happen. We wanted to love and keep Owen from the beginning. If there was even a small chance he could have lived a relatively happy and long life, we would have done anything to make that happen for him. It just wasn’t possible. His little body wasn’t viable outside of my body. I couldn’t bear the thought of delivering him only to see his dead, misshapen body or to have him die in front of me, gasping for air. I wanted to remember him as my baby that I loved and felt kick inside me. My stubborn boy who would never cooperate for ultrasounds, who loved to play with his umbilical cord, and who made me so sick in my first trimester. I wanted to remember him and me at our happiest.

 On top of all of this, the state of Utah wouldn’t give us a death certificate to document his existence because he was being terminated. However, if I miscarried or naturally delivered him early after 16 weeks gestational age, that was totally fine in their eyes and would warrant him being added to state records. They were punishing us for making the most difficult and heartbreaking decision of our lives.

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.

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.