Our Journey with Pregnancy Loss
It’s been a shitty year. Of course there are moments to be grateful for but in our house 2022 will go down as a shitty year. Maybe the shittiest. We lost two pregnancies this year. I was actually pregnant for the majority of the year. Been through the first trimester twice. Experienced two D&C’s (or technically I think D&E). I’ve had several ultrasounds and we racked up some hefty hospital bills. My social anxiety (or anxiety in general) has greatly increased, in part because I’ve gained weight and don’t feel comfortable in most of my clothes and also because I find myself screaming at random people in my head “You have no idea what I’m going through!”. All of that and no baby to show for it. This year has flown past me while I was stuck in my bubble of nausea and anxiety.
I am sharing our story in hopes that it will, for one, be therapeutic for me. Writing it has been. But I also know I am not alone in this. Pregnancy loss is common and still not talked about. You go through this horrible loss and are supposed to suffer in silence. And the silence often seems like it is more about not wanting to make other people uncomfortable. But I DO want to talk about it. I want other women to feel like they can talk about it too. Especially at a time when women’s health is being targeted for political reasons. I cannot believe that we have gone so backwards to a place where we are fighting (again) for our right to healthcare and the right to make the best decisions for our bodies and our families. So without further adieu here is our story of 2022…I want to try to keep this brief, but it’s a long story, so bear with me.
Our First Pregnancy:
We first found out we were pregnant at the end of February after trying for four months and we were thrilled. Our first ultrasound was at 7.5 weeks. While they could confirm I was pregnant… pregnant uterus and a yolk sac (which feeds the pregnancy in the beginning) there was no fetal pole, no tiny baby, no heartbeat. We were told maybe we were off in our timing and our tiny baby just wasn't visible yet. So we were sent to another office the following week for a follow up–a little confused and hoping it was just too early. During our second ultrasound they saw the same thing. Pregnant uterus, yolk sac, no baby. At this point we were told it wasn’t looking good, but the only way to confirm was to wait two more weeks and come back for another follow up. So we waited and hoped. All the while I was dealing with food aversions, mild nausea and fatigue. My hcg levels continued to rise. My body continued to act pregnant. I was pregnant.
Our third ultrasound confirmed that this was not going to be a viable pregnancy. I was pregnant but there was no baby, or the baby started to form and didn't make it far enough to show up on an ultrasound. SO we were given our options. Wait and see what happens, take a pill to induce the miscarriage or a D&C (an outpatient surgery to remove the pregnancy tissue). We decided on a D&C. While there wasn’t a lot of tissue, my body was holding on tight to the pregnancy and after the emotional weeks we’d been through, I just wanted it to be over. At this point it was April, almost two months since we found out we were pregnant and I just wanted to move on.
Our Second Pregnancy:
And move on we did. We were told we could start trying again right away, so went for it. You can imagine the surprise and excitement to find out we were pregnant again at the end of June, just over two months after the D&C procedure.
The first ultrasound this pregnancy was probably the only good appointment we ever had. It came with a different kind of surprise. Two strong heartbeats! Twins! Mono-di identical twins. Two babies, with their own amniotic sac, sharing one placenta. This made it a bit of a higher risk pregnancy but I didn’t care. It felt right.
But it only felt right until our next appointment. Our second ultrasound at 11 weeks did not go as well. We learned baby B had a cystic hygroma. This means there was fluid around the baby’s head, neck and spine which could be caused by a structural issue, a genetic abnormality or it could go away on its own and mean nothing. The only way to get some answers was to start testing. First up, the NIPT test. This screens my blood for the most common genetic abnormalities. And results came back the following week–everything was normal. A glimmer of hope AND we learned we were expecting girls!
Next a CVS test, which is a biopsy of the placenta and very uncomfortable (read: painful). They inserted a needle through my belly to the placenta to extract a sample to test for genetic abnormalities. From this sample, they run four panels. The first two came back in about a week and both were normal. We had to wait about 4 weeks to get the third panel back, which was also normal. We started to get our hopes up that everything WAS going to be normal.
But again, that didn’t last long. We had an ultrasound at 16 weeks, shortly after learning the good news from the third test. The scan took about 45 minutes while the ultrasound tech showed us all the developing parts of our girls. They were moving around like crazy so some measurements were hard to get. Both girls showed us their hands and we got to hear their heartbeats. They were both small, measuring a few weeks behind. I figured that wasn’t great but they were growing. I was just starting to relax as I watched the screen and saw their tiny bodies wiggle around. Then, the doctor came in. She told us Baby B is getting worse. Her whole body is swollen and there is fluid in her lungs. A full body edema with bilateral pleural effusions, that's what was written on the appointment summary. Her best guess was her heart was failing or maybe she had a lymphatic problem. But we still didn't know why. Why aren’t our girls growing like they were supposed to and why was Baby B so sick?
We were given four options. First, wait and see what happens. The issue with this is if we lose Baby B we have a good chance of losing baby A too. Our second option, fetoscopic laser surgery. A procedure done through a small incision that uses a laser to divide the placenta. This would protect Baby A if Baby B passed. The third option was a reduction. They could surgically end Baby B’s life and at the same time make sure Baby A was protected. Or, lastly, she said we could end the pregnancy and start over. I was crushed. I just wanted my girls to be ok. I had to do something.
The only option that made sense to me was the fetoscopic surgery. I didn't want to give up on Baby B but we needed to protect Baby A. The procedure was scheduled for the following week. The day started with an ultrasound and nothing had changed so we were sent to the hospital to wait for the surgery. As we waited, they drew my blood, put in an IV line and then my phone rang. It was our genetics counselor. The final panel from the CVS test (done over 5 weeks ago) was in and they found something. A rare genetic deletion. A mosaic of a rare genetic deletion. So it wasn’t in every sample, but most of them. This could mean a mosaic form of the deletion, could be caused by maternal cell contamination or maybe it’s only in one baby and not the other. Only way to know is another test.
I was so nervous about the procedure about to take place, I don’t think it really sank in. They continued with the fetoscopic surgery and added an amniocentesis to biopsy the amniotic fluid from each baby. The whole procedure lasted about 45 minutes and was done with a spinal block. All I could do was lay there, on the cold operating table while they poked and prodded at my belly with so much fear and uncertainty running through my head.
We all made it through the procedure and awaited the amniocentesis results. They came about a week later and confirmed our worst fear. Both our girls had the same genetic deletion. This was causing the growth restriction and the heart problems. There was a chance both girls could make it to birth but they would face a lifetime of problems. The health problems had already started and they would deal with cognitive and developmental issues as well. They would never be fully independent. So we had to make the most difficult decision of our lives.
We wanted our girls so badly. They were fighters and had made it so far. I wanted them to be ok. I wanted to be able to hold them and kiss their little heads and tiny fingers and toes. But we didn’t think it would be fair. Not to them or to my husband and I. They would struggle their whole lives and it would take a toll on us in one way or another–emotionally, physically, mentally, financially. We made this decision though it didn’t really feel we had much of a choice. *I need to also make a note here, that while this was a horrible decision to make, I am grateful to live in a state that respects and protects women’s right to care and right to choose what is best for themselves and their families. *
So, we were back at the hospital a week and half later, completely heartbroken, to end the pregnancy that we wanted so badly. I carried our girls for 18 and a half weeks but I never got to feel them move. October 6th 2022 we left the hospital once again, without our babies.
Trying to move on…
I felt empty and more lost than ever. I didn’t want to talk to anyone. The emotional toll of ending a pregnancy, you so badly wanted, is excruciating. It has been so hard to put words to how I felt throughout this whole journey.
The facts are easier to talk about, I can recite what happened when… but describing emotional rollercoaster we have been on is much harder. I know things will get better. I know life goes on. I know we will try again and I know one day I will have my chance to be a mom. But that comes from my logical thinking brain. The other part of me is screaming FUCK THIS! I have never been one to swear, it wasn’t my thing, but the word fuck has become a regular part of my vocabulary. Fuck this, fuck that, fuck them and fuck you. I don’t really mean it, at least not all the time. It’s just that life doesn't feel fair right now… it feels fucked up.
And it's no one's fault... I have no one to blame for all this pain. So there is nowhere to place the anger, sadness and frustration, which makes it all harder to process. There is no one to yell at… I try my best not to beat myself up because I know that gets us nowhere. I have tried to turn to meditation, but when you feel so angry and upset (the times when meditation is likely most useful) it feels impossible. I end up sitting and stewing in negative thoughts until I burst into tears and give up. As my therapist has told me, maybe that's what I need. I need to cry it out and sit with these emotions and make space for them. And I really do appreciate that advice and I know it’s true but I am so tired of feeling sad and angry. I don't have any more space for these emotions. I’m filled to the brim with negative emotions and I’m over it, I’m tired.
I have found some ways to process my grief. Running has been helpful. It seems to work better than sitting with the emotions. I’ll run them out. I am not a runner. I run. I am not a runner. I started with two very slow miles and have recently added a third. I move slowly. Some days I go a little harder, some days I cry on my runs, and some days I want to punch every tree run past. But I keep going. Slowly feeling my body getting stronger.
Art has also been a helpful outlet. If you can call it that. I am usually too in my head when I try to create, too afraid of doing it wrong. After doodling some flowers and simple watercolors I was feeling more frustrated, so I took my marker and just started scribbling lines all over my paper. Scribble therapy. Not trying to make anything but black marks on the paper. To be honest I don’t think I have ever let myself do that before (a fear of wasting paper) but I think it is something I will keep in my tool kit for dealing with bad days. It is meditative in its own way.
These things help to make the grief more bearable. Putting in the work to heal and allowing time to pass. It all makes it more bearable though I don’t know if it will ever fully go away. It’s a loss of our daughter’s lives as well as the dreams of what our lives could have been together. I choose to believe their souls are still with us. Maybe they were only supposed to have such short lives because we needed to learn something from this. Or maybe their souls didn’t match with the meat suits they were given and they will come back to us in a different form. I know we had to make this decision but I feel like this is how it was always going to play out. Call it fate, the timing of the Universe or God’s plan… this story was written before I was pregnant. Maybe even before I was born. Our story isn’t over though. We aren’t going to let this break us. We won’t give up.
As I mentioned in the beginning of this post, I know I am not alone in this experience of loss. It is all too common and yet not talked about. If you are reading this and it resonates with you or you have experienced a loss or are experiencing one now and need to vent or have questions, feel free to send me a message. I feel like there was so much more I could have written but was trying not to make this too long.
This is a place for love. If you disagree with our decision, the one that was right for our family at this time, please keep your thoughts to yourself. Thank you.
Resources:
Just a few resources that were recommeded to me or that I used on this journey…
Support Groups:
I never ended up joining any support groups though I thought about it often and believe they could be very helpful. The two below were recommended to me. Both sites have support groups for varying topics like termination for medical reason.
Postpartum Support International
Book:
This book brought me peace after the first loss and changed the way I viewed it. It may seem a little out there for some but I enjoyed the stories in the book and found healing in the idea of spirit babies.
Spirit Babies by Walter Makichen
Podcasts:
Both of these podcasts cover a variety of topics about fertility, loss and conception. I scanned through them both and found episodes that resonated with me.
Miracles Happen Fertility Podcast
App:
I began using the Modern Fertility App for tracking ovulation but I ended up using the online community more frequently. It was nice to be able to post questions or stories and find support from others in similar situations.
Website:
This site was shared with me and has helpful resources regarding birth injuries and pregnancy complications.