Aside from the death of my firstborn son, pregnancy after loss is the most difficult thing I have ever done. Let’s be real – pregnancy, in general, is difficult. Even if you are one of the lucky ones who can enjoy 40 weeks full of pregnant bliss without any previous history of loss, there is no denying how physically and emotionally challenging it can be to create a little human. Add loss to that, and I would go as far as to say it could be one of the most difficult 40 weeks of your life. I was not able to experience any pregnant bliss in the pregnancy after loss, so I feel very fortunate that I was able to experience ignorant pregnant bliss for 22 weeks with my first baby before life as I knew it changed indefinitely.
My husband and I found out at our anatomy scan that our first baby had Trisomy 13, otherwise known as Patau Syndrome.
After several scans, trips to a Maternal Fetal Medicine clinic, and an amniocentesis, the news only continued to worsen as we learned our beloved baby boy was dying. Patau Syndrome affects 1 in nearly 20,000 babies. There are no circumstances in which a baby with Trisomy 13 has a good prognosis and most do not live more than a few hours, but Charlie’s case was extremely severe. We were told that it was essentially a “fluke” that this happened to us, and equally a “fluke” that he stayed alive for as long as he did. What made it harder to swallow was the fact that my first trimester screenings showed a perfectly healthy baby, so this diagnosis came completely out of left field.
Shortly after his diagnosis, Charlie was born still at 22 weeks – the best and worst day of our lives. My husband and I both continue to work through the trauma of these appointments, Charlie’s diagnosis, and his subsequent and inevitable stillbirth every single day. It drives everything we do and will affect us for the rest of our lives.
The decision to try to conceive again was not an easy one to make.
I had one single pregnancy in my life at that point, and that one single pregnancy ended in a traumatic and devastating death. I say death because while the term “loss” is technically accurate, I think it downplays the reality of what happened. Charlie was my first pregnancy and my first baby, so my husband and I did not ever know pregnancy to exist without death. It’s all we knew, so we had no confidence that if we tried again that it would have a different result. I remember thinking when giving birth to Charlie that there was no way that I would be able to do this again. I believed I’d have to go my life without having my own biological child.
As the very initial grief fog lifted, I realized that I grew and birthed my desperately wanted baby, and while that made me a mother, my desire to be a mother to a living baby was not being fulfilled. We parent Charlie in the stars, but I desperately wanted to parent a child on earth. This drove the decision to try again, though it was still not an easy one to make. We knew we would never truly be “ready,” especially given our history. When something so rare happens to you, and you become that “one” in the statistic, there is no longer any comfort in statistics. We learned that we are not excluded from terrible things happening to us, and there was no convincing us that it would likely work out if we tried again.
Pregnancy after loss was excruciating.
We were lucky that we were pregnant on the first try. I was both terrified and happy that I would soon have my rainbow baby, and I actually had a little bit of hope that things could work out for us this time. I had a great plan with my OBGYN practice that included extra testing, near-weekly appointments, and frequent monitoring through MFM. We were so surprised and equally thrilled to learn that not only was I pregnant with one baby, but we had naturally conceived twins! I thought that we totally deserved this gift from the universe after enduring what we had. Two babies at once, and I would never have to go through a pregnancy again.
However, after a few scans, we learned that Baby B no longer had a heartbeat. She died around 10 weeks. Two out of three of our babies had now died, and any glimmer of hope I held onto was now shattered. I had nearly no confidence that Baby A would survive. When a baby dies inside of you this early, a D&C is often performed. Because Baby B was still healthy and alive, this was not an option, and so I was told that she had to stay inside of me until she “absorbed” into my body and Baby A’s body. The doctors were unable to give me any time frame as to how long this could take. Walking around, knowing she was dead inside of me, was agonizing. Seeing her still body slowly getting smaller on each subsequent scan was unbearable. The anxiety I struggled with before she died was hard enough, and now it was truly debilitating. But I was still pregnant, and I had to do everything I could do to keep myself stable to keep this baby safe.
I thought that once I hit certain milestones in this pregnancy after loss, some of the anxiety would lift. It did not. If I could get more in-depth testing early and learn that this baby was healthy, I would feel better. I did not. If I could see that this baby was healthy at the two separate anatomy scans we had, I would feel better. I did not. If I could make it past the point where Charlie died, I would feel better. I did not. Once I could feel this baby moving and kicking, I would feel better. I did not. Instead, I wondered if he wasn’t moving as much as he was supposed to. If we could make it to “viability,” a term I now know is not certain, I would feel better. I did not. In fact, I got progressively more anxious as time went on. Being a part of the loss parent community has shown me a million new reasons why this baby may not survive. For my own sanity, I had to take a break from the community that helped me so much after Charlie’s death.
I lived in fear for the entire pregnancy while also celebrating my new baby inside.
I think that when you are pregnant after loss, you either tend to dissociate from the new baby or you bond with that baby extra hard. I fell in the latter category. I knew the devastation of holding my stillborn baby. I knew the devastation of learning my next baby no longer had a heartbeat. In what felt like the likely event that this baby died too, I wanted to feel like I didn’t miss out on anything with him. I wanted to know his sex. I was nervous when we found out he was a boy because I was worried I would compare him to Charlie his whole life. I am glad to say that so far, that hasn’t happened. We named him so that we could start to create an identity for him.
I took every bump picture, and we took maternity photos just in case that’s all I had left of him someday. We prepared his nursery far sooner than most, especially after loss, because it helped create a world we could look at in which Benjamin would come home. We read a book to my belly every single night just in case that was the only time we got to read to him while he was alive. We truly cherished every anxiety-ridden moment, and at the same time, I couldn’t wait for it to be over – with a healthy baby, of course. Once I reached the point where Ben would need to be born rather than have a D&C, I celebrated. I was so glad that if he died, I would get to meet him just like I did Charlie.
I had a few scares involving a trip to the emergency room and extra trips to the doctor for heartbeat checks for my own peace of mind.
I started having contractions at 33 weeks in the very early hours of the morning, and we went to the hospital. I don’t know what I was expecting, but I was not expecting to hear I was already 4cm dilated. I instantly burst into tears. It was too soon! I was convinced he was not going to survive. “Viability” is a concept that is only comforting to those who have never held their cold, still baby. I was convinced that I just went through 33 weeks of agonizing anxiety to ultimately deliver my baby too early and that he would not survive. Doctors tried to stop labor, but it didn’t work. Instead, they prepared us for the very real and likely possibility that our baby would need to spend a significant amount of time in the NICU. I did not care as long as he was alive.
The next 33 hours of labor were long and painful, and only one nurse took extra special care to be sensitive with us, given our history. I will be forever grateful to her. The rest of the nurses and doctors need some serious education in patient sensitivity. Unfortunately, they tainted what was already a terrifying experience for my husband and me. My concerns and questions were repeatedly dismissed. I was not given the opportunity for pain management, and they refused to check the progress of my dilation. One doctor even commented that I would hopefully be going home soon. The tears didn’t stop for those 33 hours, but this comment sent me into a true tailspin. I was in active labor, and there was no way I could go home. If she had taken the time to read our history, I hope she would have approached this differently. Regardless, I refused to work with her at my practice from then on.
After what felt like an eternity, Benjamin was born into this world six weeks too early with the loudest of cries, and it was the most beautiful sound my husband and I had ever heard.
Nothing is more deafening than delivering a baby into this world silently, like we did with Charlie. The sound of Ben crying was music to my ears. To be honest, it still is. They gave him a quick once-over and deemed that he was in much better shape than they expected for 34 weeks, so they placed all 5 pounds of him on my chest, and I got to enjoy about 15 minutes of what I am guessing is the typical mom and newborn bliss. Then, they cleaned him up and wheeled him off to the NICU. My husband went with him, and he was not alone for even a moment. Thankfully, my birth and recovery were completely routine, so all I had to do was focus on Ben.
He stayed in the NICU for one week, and my husband and I slept next to him every night, only going home every few days for food, clothing, and a shower. We had no choice but to leave the hospital without Charlie, knowing we’d never see him again and he would never get to come home. Leaving the hospital without your baby again is a new kind of trauma, even though Ben was healthy.
I will always be grateful for Charlie for existing in my life.
He changed our lives for the better, and we know true love because he existed. I am extra thankful to him as well because if he had stayed, I wouldn’t know the pure joy and love that is Benjamin, and I wouldn’t know my B. I constantly yearn to visit the parallel universe where all three of my babies exist together and at the same time. I already spend a lot of time there in my dreams.
Baby A, Benjamin, my rainbow baby, is now also my “sunrise” baby. It is a term I had read about online shortly before his birth – when one twin dies, they are the “sunset,” and the surviving twin is the “sunrise.” Ben is a rainbow in the sunrise, something you don’t see very often but still is not impossible.
Words simply cannot describe the relief, joy, and grief that came along with Benjamin’s birth. He has replenished some of the hope that we lost in the very dark days following Charlie’s and B’s deaths. He has healed me in more ways than I can count, but it was never his job or our intention for him to do so. In fact, having Benjamin has opened new and extremely complex layers of grief that I had not known existed. Still, it has also brought immeasurable joy and happiness into our lives that once felt dark and hopeless. My deep-seated desire to parent a living child was finally fulfilled. I don’t know that I will ever tell him the entirety of how much he has helped me because I don’t want him ever to feel that kind of pressure, but he truly saved my life, and for that, I will be forever indebted to him.
- What is a rainbow baby? And is this term right for you?
- Will I Ever Feel Ready? 7 Things to Consider About Trying to Conceive After Loss
- Important Milestones When You’re Pregnant After Loss
- A Rainbow Baby: Where Grief and Joy Collide
- Why Becoming Pregnant After Loss is Courageous
- What I Want You to Know about Pregnancy After Loss
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