One year ago today, on January 30, 2020 (for context, about 6 weeks before everything shut down for COVID), I became part of a club that no one ever wants to be a part of, yet so many are forced to be. At what was supposed to be a routine OB appointment, I found out that the fetus I was carrying no longer had a heartbeat.
While talking about this isn’t easy, it’s necessary, and this is why I’m sharing my experience:
- It is therapeutic for me to re-visit my memories, as horrific as they may be, and put them down into words.
- I want to let other people, who are going through similar experiences, know that they are not alone. I feel so very strongly that it’s important to not keep things like this a secret. In sharing my story, I want to help end any stigma attached to miscarriage, and bring awareness to miscarriage — because it’s much more common than you think and women going through it and their partners shouldn’t be alone in it.
- I want to provide more information about what it’s really like to go through what I went through — because let me tell you — there’s not a lot out there! While I was going through my miscarriage I found barely any accounts of women going through miscarriages at 16 or 17 weeks. Sure, I was able to talk to my doctors, but what I really wanted was a personal account from a patient’s perspective so I knew what to expect in the days ahead from someone who had been through it.
So, here we go. . .
November 1, 2019
It took us so long to get to this point (short version: tapering off my migraine meds, a PCOS diagnosis, infertility, starting to see a fertility specialist / Reproductive Endocrinologist), but finally on our 4th wedding anniversary, my husband Ben and I found out I was pregnant. Our second IUI (intrauterine insemination) had been successful! While we were apprehensive (general worries about miscarriage plus those old Jewish superstitions), we were both so happy!
Thursday, January 30, 2020
I woke up a bit nervous because I had (what was supposed to be) a routine OB appointment scheduled that morning and I knew I’d be getting a blood draw. I’m not great at getting blood drawn. I get anxious and sometimes I pass out (or feel really dizzy). Overall, it’s not a great experience. But that was supposed to be the worst of it. I drank plenty of water with my breakfast that morning to make sure I’d be well hydrated and the blood would flow easily.
When my OB went to check for the fetal heartbeat with the doppler she had trouble finding it. She thought she could hear it behind mine, but couldn’t get a strong reading. After the bloodwork was done, my OB sent me for a sonogram to get a clearer picture of what was going on.
When I went in for the sonogram, the tech put the goo on and started moving the wand around on top of my stomach. She kept moving the wand around and taking lots of measurements on the screen, not saying much.
Unfortunately, she couldn’t find a heartbeat. The fetus was measuring at 15 weeks + 1 day, while I was supposed to be measuring 16 weeks + 6 days (due to be 17 weeks pregnant the next day).
How was this even possible?! I hadn’t experienced any symptoms — no bleeding, no cramping — nothing. This is what’s known as a “silent miscarriage” or a “missed miscarriage.”
All of my prenatal bloodwork leading up to this was normal, including our preconception genetic testing and the results from my then recent NIPT blood test. That’s the test that happens around 13 weeks that screens a fetus for the most common chromosomal defects, including Trisomy 21 (Down Syndrome), Trisomy 13 (Patau Syndrome), and Trisomy 18 (Edwards Syndrome), as well as other sex chromosome abnormalities. For me, everything came back as low risk. But, nonetheless, the fetus had essentially been dead for almost two whole weeks.
After the ultrasound tech told us there was no fetal heartbeat, we talked with my OB about next steps. Since I was nearly 17 weeks my OB told me it was best to have a D&C (dilation and curettage) or a D&E (dilation and evacuation). Thank goodness — because I definitely didn’t want to go through what I imagined to be quite a traumatizing and physically painful experience of having to give birth to it or let it pass on its own!
Unfortunately, the Catholic hospital that’s 5 minutes from my house, and associated with my OB practice, wouldn’t do the procedure. I don’t know if it was because I was too far along, or if it was some other anti-choice reason. (The D&C and D&E procedures are the procedures used to terminate a pregnancy, whether it’s a result of miscarriage or because someone is choosing to have an abortion). Whatever the reason, they referred me to another hospital in downtown D.C.
I was just feeling like it was one bad thing after another that day. The OB office at the other hospital wasn’t able to schedule me for a D&E until the following Wednesday (February 5th) — almost a whole week away! We called around to three or four other local hospitals but no luck. One of them no longer did obstetrics care, the others didn’t perform the procedure either. I called Planned Parenthood as well, but they didn’t have an appointment until the following Thursday, so that was no better.
Friday, January 31, 2020 – Monday, February 3, 2020
Those in-between days, after my OB appointment when we found out there was no fetal heartbeat until day 1 of the procedure, were pretty weird. Thankfully, Ben and I both took the Friday off to process things, which was helpful for both of us.
Physically, I felt and looked a little bit pregnant. (I was just starting to show a little tiny bit and had begun wearing maternity clothes a week or two previously.) My morning sickness — that was lasting all day — was still ever-present. I was really weirded out that I’d have to wait so long for the D&E. It was hard to mourn for a loss when I was in this state of limbo between pregnant and not. That state of limbo was really terrible, and I felt really numb. I had this intense feeling that I couldn’t cry (or perhaps subconsciously wouldn’t let myself) because I had to stay together for the procedure. I didn’t want to completely fall apart or freak myself out and then not be able to get the surgery for whatever reason.
For me, the thought of sitting home and being bored all those days before the procedure was really terrifying. But, I am incredibly thankful that we had a bit of a busy weekend already planned so I could get out of the house and distract myself from what was going on. That Saturday Ben was due to read his Bar Mitzvah portion on the 21st anniversary of his Bar Mitzvah at the synagogue we had recently joined. We opted to go ahead with this, but told the Rabbi and Cantor what was going on with us so that they’d know. The support from our Rabbi and Cantor during this time was incredibly meaningful, and made me so glad we had decided to officially stop “shul shopping” and join this synagogue only a few weeks prior. Ben’s parents came down from Baltimore and my Dad came down as well. It was wonderful to have family with us during that time. Then the next day (Sunday) I got together with a very close friend I’ve known since second grade. We live about an hour away from each other so we had planned to meet at a cafe about halfway between us. It was really good to see her and good to have the support of a close friend. On Monday I worked from home and was very glad for the distraction.
Tuesday, February 4, 2020
Finally, Tuesday morning rolled around. Because I was so far along (17 weeks and a few days at that point) the procedure was a two-day procedure. On Tuesday I had the first part of the procedure, which was having the laminaria sticks placed. The purpose of these is to help soften and dilate the cervix. I was told it could be a little painful, and if any fall out into the toilet to count how many and let them know. Thank goodness, none fell out! I know everyone’s pain tolerance is different, but for me it wasn’t any more painful than period cramps.
Wednesday, February 5, 2020
Wednesday morning — the day of the procedure — was a bit of an adventure. I was told my appointment was at noon and that I should arrive at the hospital at 10am. I was glad because that would give us plenty of time to wake up and get ready. Ben’s mom was supposed to pick us up, drive us down, drop us off, sit with Ben in the waiting room while I was getting the surgery, and bring us back home. But, at about 6:30/6:45am I got a phone call from the hospital asking where I was. Apparently, the time for my surgery got moved up to 8am without anyone ever calling to tell me. They told me to get there as quickly as I could. I couldn’t eat, so that was one less thing for me to do. Ben walked the dog while I showered. Then he showered and I prepped his breakfast to go. We ordered a Lyft and ended up getting there close to 8am. His mom thankfully got to the waiting room a little after we went back. I hope, if you’re reading this because you too are going through this, that this doesn’t happen to you!
Ben was able to sit with me while they went through some details and asked me questions. He held my hand as they put in the IV. (Thank goodness because I have a huge fear of needles!) I met the anesthesiologist and then I don’t remember much from there. I was totally put under, which I am very thankful for, as I didn’t want to be awake at all during or have any memory of the procedure.
The procedure itself wasn’t so bad — truly. I think the worst of it was the IV in my hand (remember, big fear of needles).
My throat hurt for a few days afterwards from the anesthesia, and I had heavier bleeding for a couple days followed by lighter bleeding/spotting that lasted a few weeks. But other than that, the procedure and recovery wasn’t so bad. The days in limbo — between finding out there was no heartbeat and the procedure — were worse in my mind.
After the procedure was done and I was home recuperating, I was finally able to cry a little. I was told that when my pregnancy hormone levels fell and were regulating back to normal, I might experience a rollercoaster of emotions. That never really happened for me though. The grief came in waves here and there and sometimes was triggered by unexpected things.
I had to keep wearing my maternity clothes for a few weeks after the procedure, but once I was back in normal clothes, I stowed them away in a basket in the back of our closet. They’re sitting there waiting to be worn again, hopefully one day in the near future.
Finding Out What Went Wrong — All of the Tests
Most women who experience pregnancy loss go on to have a healthy pregnancy later. But the question remains, why did this happen? What went wrong?
Both my regular OB and my RE (Reproductive Endocrinologist / fertility specialist) suggested we get genetic tests done on the “conception material” (this is what they call the fetal remains and placenta FYI) to check for any genetic abnormalities or conditions in the fetus that the NIPT test didn’t pick up. They found nothing. For me, this was unfortunate news. Knowing there was a definitive cause for what happened would have been so much better than the unknown.
That was all the testing we did. But, I wish I had known to inquire about these other tests:
- Amniocentesis (also called an “amnio”) to test the amniotic fluid for a genetic condition or an infection.
- Autopsy (a physical exam of the fetus) to check the fetus’ organs for signs of birth defects or other conditions.
- Tests for infections on the placenta and the umbilical cord.
While these additional tests may have helped my doctors find out what caused the miscarriage and if I’m at risk of having another miscarriage in the future, it’s common for there to be no apparent cause.
What I thought was my biggest fear, while it was definitely very sad and tragic (I don’t mean to trivialize what happened), was not the worst thing ever in the world. I got through it. Ben got through it. And we both came out the other side of it ok. While I don’t think I’ll ever “get over it” I do feel like I am able to go most days without it completely consuming my thoughts.
Our immediate family (parents and siblings) knew early on that I was pregnant (since they knew we were doing the IUI treatments), but we had waited to tell our extended family until we got the results from all of my prenatal bloodwork. We thought that since those results came back normal / low risk, and I was past the 12/13 week mark, we were in the clear. The thing is, you are never really “out of the woods” or “in the clear.” There isn’t a “safe zone” or specific time during pregnancy when all worries are gone. The reality is, that a miscarriage (or still birth) can happen all the way up until delivery. While the statistics show that most miscarriages happen in the first trimester (before the 12th week of pregnancy), and that miscarriages in the second trimester (between 13 and 19 weeks) only happen in 1% to 5% of pregnancies, it is still really scary to think it can happen any time!
When we were sharing news of my pregnancy, our parents told their siblings who told their kids, etc. Thankfully, our parents took on the burden of telling everyone they had told, that I had had a miscarriage. In the end, while I was nervous about that part (having to tell people I had had a miscarriage), it was wonderful to have the extended support. We asked for no texts or phone calls, and our parents passed that along. But, we did get some wonderful heartfelt cards via snail mail from family which really lifted my spirits.
Two things I wish I had been more prepared for: the medical use of the words “spontaneous abortion” and “fetal demise.” They were all over my medical paperwork, which was very upsetting to say the least. I didn’t know that the medical term for a miscarriage is a “spontaneous abortion.” As a staunch advocate for reproductive justice, and having worked for a women’s rights non-profit advocacy organization, I had always seen the word abortion and thought choice. You choose to carry it to term, or you choose to terminate. But there was absolutely no choice here, and every time I saw abortion on any of my medical paperwork, I kept having instances of cognitive dissonance.
If you’ve read this far, thank you! If you too are going through this, I hope my story has helped you. There is no shame in miscarriage. Sometimes, it just happens. It can be a lonely experience, but the more women who share their stories can help to relieve a little bit of the loneliness.
I also really want to commend and thank Chrissy Teigen for her very raw and vulnerable Instagram post and Medium article, and Meghan, The Duchess of Sussex’s recent Op-Ed in the New York Times, for being brave enough to share their miscarriage experiences. These women sharing their stories, are what inspired me to finally finish writing this.
Until I am holding my future child in my arms, it’s difficult to believe that this will actually happen for us. But, I try every day to have hope.
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Photo credit: Olaf Meyer, via Flickr (user meolog)