Late Loss at 31 Weeks and Finding the Way to Try Again: Rachel’s Infertility Journey
“When you read stories of others getting pregnant after a late loss, it provides proof that our story could be different a second time around…I wanted our story to be different.”
Rachel and her husband anxiously started their conception journey in 2020. Rachel had previously been diagnosed with polycystic ovarian syndrome (PCOS) and was told she could face challenges when trying to get pregnant but didn’t know what range of challenges or what her options would be. When they started to try naturally, Rachel’s doctor immediately started her on Metformin, and they were able to conceive the very first cycle on the medication. Her initial concerns about PCOS challenges were diminished after being able to conceive so quickly however that pregnancy was the start of an incredibly painful and heartbreaking infertility journey they never could have imagined.
‘I’M SORRY THIS IS HAPPENING’: THE 30 WEEK ULTRASOUND THAT CHANGED EVERYTHING
“Our first pregnancy started like any other first pregnancy and was smooth sailing. I didn’t have a hard first trimester and it was always considered low risk because we were young and healthy. We hadn’t experienced any complications until around 30 weeks when my doctor ordered an extra ultrasound because they thought my placenta looked a little bit too low. My husband and I saw it as an extra opportunity to see our baby, but it was during that ultrasound that our pregnancy was no longer like any other first pregnancy.
The ultrasound tech was taking an unusually long time and then she left the room. A maternal-fetal medicine (MFM) doctor returned, looked at the images, and started to share very factual findings of what he saw. He told us that there were extra fluids in our baby’s brain, but he didn’t know what it was or what was causing it. We asked what the implications were and why it was happening and he no answers for us. He was going to order additional tests but until they had more information, they had no answers for us.
The MFM ended the consult saying, ‘I’m very sorry this is happening’, and even without concrete answers, I knew that something was wrong. My husband looked at me, saw that I was crying, and he also knew in that moment that something was not right with our baby.”
LEARNING YOUR BABY’S BRAIN IS ONLY HALF DEVELOPED
“We left the hospital after that 30-week ultrasound not knowing what was happening to our baby. I immediately started going into a Google and Facebook group rabbit hole just trying to understand medical terms that I had never heard before and never imagined I would need to know. We were also referred to a genetic counselor (GC) and she started explaining to us what the different medical terms meant in normal language, which provided a bit more understanding. But in reality, we still had to do our own research.
During Christmas and New Year’s, our holiday was filled with incredible worry but also a round of testing we never thought would be a part of our pregnancy journey. There were blood tests and MRIs, and we were ultimately referred to a neurologist who looked at our MRI and again told us what was happening in very factual terms. She would look at the scan, tell us what she saw, and share the implications of what would then happen to our child and his development, but could still not explain why any of this was happening.
What we did know was that our child’s brain was only half developed and the implications of what would happen to his life and the quality of his life. That was the only information we had when trying to make the absolute hardest decision about what we were going to do.”
“The doctor ended the consult saying, ‘I’m very sorry this is happening’. and even without concrete answers, I knew that something was wrong…our child’s brain was only half developed.”
HAVING TO MAKE AN UNBEARABLE DECISION: DO WE TERMINATE?
“My husband and I regrouped with the genetic counselor and that is when she brought up the option to either keep the pregnancy or potentially terminate the pregnancy. I had already been researching our options and terminating the pregnancy was something that I had a lot of questions about, but it was an option that at the time did not exist in my husband’s mind. He didn’t know it was feasible with us being close to 31 weeks pregnant, but I had already read stories of this being an option.
I asked the genetic counselor if we could talk more about how termination would work, and she shared with us what would happen. My husband and I took that information and started to think through what we should do. We didn’t tell anyone what was happening, not even our parents or friends because for the two of us, we felt like we had so little information to work with. We didn’t want to introduce other parties and opinions that could influence our decision in any way. So, we kept it between the two of us.
We had to make our decision within a couple of days, and it was incredibly hard, but we decided that we would terminate the pregnancy. My husband and I could not have our child suffer with such a long-term damaging condition that neither of us knew what we could do to help him.”
HOW WE MOVED FORWARD AFTER INCREDIBLE LOSS AND HEARTBREAK
“The time right after I delivered our son was incredibly tough for so many reasons. My husband was fortunately able to work from home and was with me the whole time but because this happened during the pandemic, my mom had to wait a month before she could come over to help take care of me. I remember when she was here with me, we would have conversations and every time I brought up potentially trying to conceive again, I would break down because I couldn’t imagine going through this again, especially without any answers.
My husband and I had heard stories of individuals going through infertility and loss and how it broke couples but for us, going through this loss made our bond even stronger. We have leaned on each other more than we have with anyone else, and I think that is one of the biggest blessings we could have ever asked to come from this experience.”
“The journey is defined by unknowns…get educated as much as possible…Knowledge is power on your journey.”
FINDING ANSWERS THROUGH A CLINICAL TRIAL
“About three months postpartum we were fortunate to receive a call from University of California San Francisco (UCSF), reaching out to us about a research study looking at late term loss. Their study focused on trying to understand the cause of later losses and they were recruiting us for the study and looking at our case in more depth. They said there would be a 20% chance that they would find out there was a genetic link to our loss but also an 80% chance that we would learn nothing new to help us figure out why this happened.
I was hesitant to participate because I didn’t necessarily want to open the wound we were working to heal. But my husband is a scientist and he thought we needed to participate. And I’m so glad we did! They did a full genetic panel and came back to us a month later with results showing there was a genetic link that had never been discovered during our previous tests.
I was shocked because the genetic link came from my side of the family and only impacted males. For generations, we had never had boys and now we knew why but we also knew why we had lost our baby boy.”
ASSURANCE TO MOVE FORWARD WITH IVF
“Knowing the genetic link to our loss, we knew that IVF was the only route moving forward but it took me time to feel ready to start that journey. I originally didn’t want to go through IVF and instead wanted to try naturally and take our chances. My husband was insistent that we only move forward using IVF because it was our safest option. He said it best when he shared that the worst day of his life was the day we had to deliver Theo, and seeing what I had to go through, he never wanted us to go through that again.
When you become a late loss mother, you start to find others, especially on social media, who have experienced a similar loss. You see these other loss moms have rainbow pregnancies and you think why couldn’t that be you? It’s not a competition but when you read stories of others getting pregnant after a late loss, it provides proof that our story could be different a second time around. I wanted our story to be different and IVF was our best option to make that happen.”
“I felt like I was on a treadmill running, not really processing the emotional burden of this process and this had to be my mental default to start our family because it truly felt like IVF was our only option to get there.”
POWERING THROUGH THE EMOTIONAL BURDEN OF INFERTILITY
“Honestly, I have been powering through the IVF process, not trying to process the emotional burden that comes with it. We started our IVF consultations in June 2022, had our retrieval that August, and after a little break, we transferred in January 2023. Our first transfer ended in a miscarriage, and I felt something completely switch in me. I felt like I had been stretched like a rubber band throughout our whole journey, and it was after that miscarriage that I just snapped and broke.
I’ve let adrenaline take over at this point and have the mindset of ‘let’s just get this done’. When we regrouped with our IVF doctor after the miscarriage from the first transfer, he gave me two options that had equal risks and success rates. I told him that I wanted the option that would get us to parenthood the fastest. I felt like I was on a treadmill running, not really processing the emotional burden of this process and this had to be my mental default to start our family because it truly felt like IVF was our only option to get there.”
PREGNANCY AFTER LOSS IS NOT EASY
“I have read so much about what it’s like to be pregnant after a loss, especially a late loss, and I worked to prepare myself mentally for the challenges and anxieties that I could anticipate. But honestly, nothing can truly prepare you until you are there truly living through it.
Throughout our entire grief journey I have become more open in some regards but also more closed in others. I became open to share my story and our journey with the online community and with people that are not personally in our life. At the same time, I became closed off to those that we were closer to because it was hard to share the journey with them and receive the support that we anticipated or needed.
I think this is really common and after speaking with my therapist, I’ve learned that it’s easier to share your journey with strangers than those that are closest to you. When it comes to sharing with those people in your personal life, there is a barrier that we can create depending on if or how they will respond to us and the experience we are going through.
After our first transfer failed, I closed off to my personal circle and decided to open up to my Instagram community instead, sharing our journey publicly. And when we got pregnant with the second transfer, I still only shared with a very small handful of individuals but that didn’t include our parents until after the first trimester. It’s almost like you must pick and choose which person you want to open up to in order to protect yourself from not being disappointed by their reactions and support or lack thereof. Them not meeting our expectations is just more weight for us to carry.”
“I feel empowered to have the found the voice that I do through my own experiences of loss and grief.”
THERE IS POWER IN FINDING YOUR VOICE THROUGH INFERTILITY
“I have found tremendous support through my husband and through finding my voice on the Internet. It has been helpful for me to process my feelings as we have gone through this journey and is the reason I started my social media accounts. Living in California, we’re very liberal and I’m fully aware that our situation is very controversial. However, I feel empowered to have the found the voice that I do through my own experiences of loss and grief.”
FEELING LIKE DOCTORS DON’T TELL YOU EVERYTHING
“What I’ve found is that doctors don’t tell you everything. It feels like part of their job is to tell you just enough of what you need to know so you can get by but it’s not everything I needed to feel like I could make an informed decision on my own.
This journey has made me aware of how important it is show up to your doctor’s appointment with a list of questions that you need answered to feel informed. The hardest part though is that you don’t know what you don’t know and therefore it can be hard to know what to ask.
That’s where social media and different online groups have been incredibly helpful. Engaging with those who have similar stories as ours has helped me figure out what questions to ask, helping me understand our rights and gain the knowledge we need to make decisions about how to move forward in this process.”
CLINICS EMPHASIZE EGG RETRIEVAL OVER TRANSFERS
“I love my clinic but, in my experience, it is very true that they place an emphasis on the egg retrieval stage of the process. At the end of the day, they are a financial institution and a business that is trying to make money. That seems to drive the focus on the egg retrieval, with less concern on the actual transfer, especially when it doesn’t work. Going through with the transfer is a fraction of the cost for them in comparison to the egg retrieval. It’s the most shocking part of the process to me.
My mindset going into an egg retrieval is very different than my mindset for a transfer. The transfer is almost a binary outcome, and we will either have success and get pregnant or we won’t. This is the stage of the process where you feel like you are throwing the odds in the air, and you expect more care from your clinic. Unfortunately, that care is sometimes not provided, and you can feel like just another patient that goes through the process unsuccessfully.”
“We have leaned on each other more than we have with anyone else and I think that is one of the biggest blessings we could have ever asked to come from this experience.”
FOR THOSE WALKING THE PATH OF INFERTILITY
“It’s daunting how much infertility dominates your entire life.
Once we started the IVF journey, we never felt comfortable planning anything, including a vacation, because you never knew where you would be in the process.
The journey is defined by unknowns, and it feels like your life is put on pause.
But get educated as much as possible. There are so many resources out there that are valuable and informative.
Knowledge is power on this journey.”
You can continue to follow Rachel’s journey to parenthood and see how she continues to uplift and support others battling infertility on Instagram @itsrachellk.