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?


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. 

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