Yesterday morning Ken and I woke up bright and early (really we couldn’t sleep much after about 3 AM because of nerves and fear) and drove down to the Johns Hopkins Hospital for our 8:15 AM appointment at the Center for Fetal Therapy. The Ultrasound Tech called us back and did a very comprehensive hour-long ultrasound to see the baby, the heartbeat, where the baby was located and to try to get a sense of my weird and crazy anatomy. She was amazing–talking to us throughout the whole exam, explaining to us what she was looking for, what she thought she was seeing, what she wasn’t seeing, what her impressions were, etc. She picked up on our cues… when we were feeling sad, she had the appropriate tone of seriousness and when we were cracking jokes to lighten the mood, she did the same thing with us. When she was done, the two doctors who started the practice came in to talk to us and do a little bit more imaging. They were both incredible. They had the best bedside manner of any doctors I’ve ever had the pleasure of meeting. They explained things to us the whole time, gave us their thoughts and opinions, fully talked through things with us, and really gave us a complete understanding of what was going on.
Specifically what was going on was somewhat of a mystery to them because even as the world-renowned experts in Maternal and Fetal Medicine at one of the best hospitals in the country (I think it switches places between #1 and #2 along with Brigham & Women’s, the Mayo Clinic and UCSF), they had never seen what I presented to them: pregnancy in the non-communicating rudimentary horn of a unicornuate uterus. Aside from the location of the pregnancy, everything looked normal: they were seeing a normal and healthy looking embryo right on track for 8 weeks, with a beautiful heartbeat of 160 beats per minute. This presentation is so rare that in a quick literature review online we were only able to find about 15 cases of this ever happening… only 2 or 3 of them had positive outcomes and the rest had negative outcomes, resulting either in late pregnancy loss or even in maternal death. So after talking to the doctors for a while, they presented us with our options: continue into essentially uncharted territory with a very high risk pregnancy which could theoretically continue as late as 36 weeks but would also have the potential to rupture anytime after 10-12 weeks and could threaten my life or at least threaten the loss of my entire uterus… or terminate the pregnancy with an injection of methotrexate directly into the gestational sac, followed by a surgical resection of the rudimentary horn, which would leave the other part of my uterus intact in the event that we decide we want to attempt pregnancy again.
Before we arrived at Hopkins, we didn’t think we would ever have this choice. We thought it was too risky and they would tell us our only real option was to terminate the pregnancy. Having the choice made me a little bit hopeful but also made the whole situation a whole lot more difficult emotionally. They let us stay in the room for over an hour… we called Ken’s dad and called our dear friends Rabbi Uri and Dahlia to seek their spiritual counseling. Ultimately, the doctors came back in to speak to us and we made the decision that we are not willing to take the risk and the chance of uterine rupture and potentially losing the option to have any future pregnancies. They took a blood sample and sent us out for lunch.
Our friends Michael (who did his residency at Hopkins and happened to be at the Hospital yesterday) and Pete (who happened to be nearby) came to join us for lunch, which was a nice distraction while we waited for the doctors to call us back. Once they got the medication from the pharmacy, they called us to come back up to the clinic. Luckily the procedure itself did not take very long and was not particularly painful or uncomfortable for me. The whole thing took about 20 minutes from start to finish, and they then sent us on our way. As far as follow-up is concerned, I will have to have a couple of HCG checks similar to last year to make sure my HCG is dropping appropriately. I will go get blood tests on Tuesday and Friday this week, and then I imagine we will need to make sure it gets all the way down to 0. On Wednesday we need to be back at Hopkins for a repeat ultrasound to make sure that the size of the gestational sac is getting smaller. We are also going to meet with a minimally invasive gynecologic surgeon to talk about resection of the rudimentary horn to make sure this never happens again. The MFMs were not entirely certain about the timing of that surgery but they said that most likely it could happen once the size of the gestational sac has plateaued, which I imagine will take about 6-8 weeks.
So physically, this pregnancy loss is mostly behind us at this point. There is still some bleeding and cramping in my future while my uterus sheds its lining, but aside from that the physical pain is over with. The procedure was fairly painless and right now I’m not experiencing much more than minor cramping. But the emotional aspect is still very present. We both feel very sad about what we just had to endure. This loss was very different than the one we experienced last year. Last year all we had was an empty gestational sac with no embryo, no heartbeat. This time we had a healthy embryo with a beautiful heartbeat. The only problem this time was the location of implantation. Last year there wasn’t really a choice to be made: there was unhealthy placental tissue that needed to come out one way or another and my body hadn’t decided to expel it on its own yet but there wasn’t the heartbreak of seeing a healthy little embryo. Last year’s loss was more of a shock in some ways because we had never experienced a loss and had a perfectly healthy and easy pregnancy with Julia so we never expected it to happen. After the heartbreak of last year this loss seemed less shocking but more heartbreaking and devastating because of the presence of a normal and healthy looking pregnancy in every way except for the location. This loss also felt more emotionally distressing because of the potential that things could continue normally. Even though I feel confident that we made the right choice (seeing article after article about ruptured uteruses in cases like this), I will always wonder “what if?” What if the Doctor was right and this pregnancy could have continued to 36 weeks? What if we could have had a healthy baby at the end of a difficult pregnancy? What if my weird horn was the exception and could have stretched to accommodate a baby? Could we be holding a miracle baby in our arms 6 months from now? We’ll never know now.
So right now the emotional pain is still very palpable. I keep feeling waves of sadness wash over me as I think about what we just had to do and think about “what if?” and “why us?” It just doesn’t seem fair.
But now we have to keep on keeping on… we have to move on with our lives and put this behind us and try to get past the heartbreak. We have to get through work and school, we have to get through day by day and eventually we’ll have to get through my surgery in a few weeks. After that we’ll have to face the difficult decision of whether we want to try again. I still feel that my desire to have another baby outweighs the fear I have about experiencing another pregnancy loss but I think after one more I might feel differently. But we will have to see when we have healed emotionally from this loss and when we feel like we’re ready to face the fear and uncertainty again.
For now I feel very grateful that we have our little miracle baby Julia (knowing now how difficult it can be to get and stay pregnant, I feel even more grateful that we had no difficulty getting pregnant with her and that I had an uneventful pregnancy and brought a beautiful and healthy baby girl into this world). I also feel very thankful for all the love and support we have received from our friends and family all over the country and even the world. We have received beautiful messages from friends we hadn’t heard from in years sending us their love and thoughts. I also feel very grateful that my mom was able to come from California to be here with us. Going through this by ourselves would be very happy. Her being her gives us the space to be sad together or alone while she can help out with Julia.
And for now I want to wish everyone a Happy Hanukkah, a Merry Christmas and a Happy and Healthy New Year! 2016 was a very difficult year for us in many ways and I hope 2017 brings with it much more joy and happiness.