My life is measured in school years. I was in school every year of my life from when I began preschool until I was 27 years-old. My husband is a high school teacher, and I work at a university. My life ebbs and flows based on the academic calendar. Two years ago, at the start of the Fall 2016 semester, a little over one month into my current job, I was 11 weeks pregnant with our first baby. 1 year ago, during the beginning of the 2017-2018 academic year, I was 17 weeks pregnant with our second baby. And now, as a third school year begins, I am 15 weeks pregnant with our third baby.
Our pregnancy journey began over two years ago, and it is continuing today. We have yet to bring home a living baby. Our storm feels far from over, but we seem to be closer than we have been before.
In November 2016, I was 20 weeks, 5 days pregnant with our first baby (who we still fondly refer to by his pregnancy nickname, Lentil) when we found out at the anatomy scan that he no longer had a heartbeat. We learned that he had fetal hydrops and that he had likely stopped developing early in my 17th week of pregnancy. I had been living my life for more than 3 weeks with my baby dead inside of me, and I had had no idea. My husband, Eric, and I were heartbroken, shocked, and traumatized. After my loss, the doctors concluded that there were no chromosomal issues with our baby and that I had not passed on an infection that would explain hydrops and a 2nd trimester intrauterine fetal demise. We were told that it was probably a random occurrence and not likely to happen again.
Eric and I began our first experience with the agonizing anxiety of pregnancy after loss when we found out I was pregnant with our second baby, Danny, in June of 2017. We attempted to enjoy the pregnancy and make space for the joy along with the worry. We had an extra ultrasound and weekly heartbeat checks in our most anxiety provoking time, between 16 and 20 weeks. At each appointment, our baby had a heartbeat. When our anatomy scan came again, at 20 weeks, 6 days, I was anxious but not truly expecting anything to be wrong. I was planning to leave the anatomy scan to head to a family baby shower. To our horror, Eric and I again heard the words “I am so sorry, I am not finding a heartbeat.” Again, our baby had hydrops. Again, our baby had died inside my body, before ever getting a chance to live. We were reliving our worst nightmare, in exactly the same way. It didn’t feel possible. It was awful, devastating, unbelievable, and as horrible as anyone can imagine.
The doctors informed us that with two losses in exactly the same way, the cause must be genetic.
It was explained that if we found no specific answer we should assume a 25% chance of this occurring each pregnancy. We had the option of getting pregnant on our own and taking our chances. We were told that if we did get an answer from testing, however, we might be able to do in vitro fertilization with preimplantation genetic diagnosis to test for the genetic mutation and only transfer unaffected embryos back into my uterus. I began to contemplate how many 2nd trimester losses I thought I could handle in order to get to a healthy baby.
A few months after losing Danny, we were incredibly lucky to get news that genetic testing had shown a mutation on a gene that had been connected with hydrops. This mutation is so rare that the specific variant that I have had not been seen previously. The syndrome and this gene mutation weren’t thought to be connected with prenatal issues until 2015. It is so rare that there are only a handful of case studies in the medical journals, and yet with every case study I read, I felt as though I was reading about myself.
It feels like a miracle that Eric and I were able to get an answer as to the rare genetic condition that we believe affected our baby boys. Because of this, we were able to utilize IVF to retrieve eggs, fertilize them, and test the embryos for the specific single gene mutation that I have. In June we successfully transferred one of our genetically tested embryos!
So here I am, at the start of a third school year, experiencing deja vu, as I am pregnant once again.
I have reasons to be hopeful, and at the same time, I am scared. I am hesitant. I know how painful two losses in a row is, and I can imagine how much more painful a third loss would be for me. I am terrified that I will have to feel that pain, and at the same time, I want to hope that I won’t lose three babies in a row. I am taking this one a week at a time, a day at a time, and even a moment at a time if I have to.
I am very happy to be able to share the rest of the journey of this pregnancy as a Bump Day Blogger. I could go on and on about the immense support I have received from the incredible women in the pregnancy loss community over the past 2 years. The support of other women who can normalize my experiences and the complexity of my emotions has helped me manage my anxiety, heal from my losses, understand what to expect, and give me permission to experience my joy. I am grateful to be able to have a space to be open about my joy and my pain, to make meaning of my experiences, and to hopefully allow others to feel a little less alone in this courageous journey of pregnancy after loss. Here’s to hoping that I get to share my journey with you for the next 25 weeks!