Emily’s Story

It was the morning of New Year’s Eve 2021 and I had my first positive pregnancy test. During the month of January, I started reading pregnancy books and downloading all relevant apps. I started to plan out what the next year would look like, how far along I’d be at each holiday, when my maternity leave would be and how we’d be spending our 5th wedding anniversary with a newborn. Fast forward to February 2022, my husband and I had our first appointment with my OB at 10 weeks. She couldn’t find our baby’s heartbeat using a doppler, so she was able to get me in for a transvaginal ultrasound while we were there. We got to see our little baby and hear his heart beating for the first time. I finally felt that I could breathe, and everything was going to be ok. After my appointment I went to the lab to give blood to do carrier screening on me and the Maternit21 test on our baby. 10 days later I got a call that the lab didn’t get results on my Maternit21 test, and I needed to do the blood draw again. Back to the lab I went, I was just about 12 weeks and assumed I just tested too early, no big deal and my carrier screening came back fine.

When I was 13 weeks pregnant, I found out my Maternit21 testing did not have a result for a second time. Multiple calls with my OB, and two days later I had an appointment with a genetic counselor and an ultrasound with the MFM Doctor (Maternal Fetal Medicine). I remember the genetic counselor telling us there was a 70% chance everything was fine but still reviewed other possibilities. All I wanted was to get in for my ultrasound, hoping we would see everything was ok. When the nurse was checking my vitals, she was concerned about my blood pressure being so high and I just wanted to scream of course it is, I need to know if my baby will be ok. We finally got to the ultrasound and it was so quiet during the scan. I remember how quickly she moved on from the heartbeat even though it was good, but it didn’t matter because nothing else was. Over the next hour, the MFM doctor did two additional scans and reviewed his findings with us. The brain, heart, skull, and face were all major areas of concern. They could not yet confirm but likely club feet and/or hands. There are no words when you are told your baby had a lethal fetal anomaly from an abnormal nuchal translucency, alobar holoprosencephaly, and congenital heart defect. We learned that one of the Maternit21 tests had noise of Trisomy 13. While we were advised we could wait to do further genetic testing but not until later in my pregnancy, the diagnosis would not change to nonlethal.

We were asked if we would consider termination. This was something we talked about before we became pregnant but honestly never thought this would be an issue. I was much more concerned about actually getting pregnant and not having a miscarriage. Our options were to terminate (via a D&E or induced labor) or continue the pregnancy knowing our baby would not survive. All options were awful. Termination was not that straight forward as just a decision between me, my husband, and our healthcare team if I wanted to have the D&E at the hospital. The termination had to be to be approved by the department chair and board and all happened before 22 weeks. We were also advised that additional testing could be required if they felt it was needed before approving.

The next day, we received the confirmation that our termination was approved. Thursday felt like a scramble between all the doctor calls from the MFM checking in and letting us know of the approval, my OB calling to see how we were doing and trying to get scheduled with a new OB for our consultant and signing of the paperwork 24 hours before my procedure. Friday morning, I met with my second OB that would do the D&E and sign my paperwork acknowledging I was terminating. This was an awful appointment to being with, let alone the receptionist wanting to check me in as a new patient – same medical group but a different office location and asking why I’m there. There was some lack of compassion checking in and with the nurse, but once we met the doctor I felt more at ease. She was on call but would be coming in on Saturday to do the procedure.

On Friday I just kept cleaning, I needed to stay busy and not have any down time. Maybe I should have but I wanted to forget this was my reality and just find a way to get to Saturday.

Saturday morning came and we made our way to the hospital. I felt like we were in an empty hospital. While I’m sure it wasn’t empty, I’m thankful it was quiet. The next two hours I was prepped and was brought warm blankets to help with my shivering. It took two nurses and the anesthesiologist to get my IV in, finally it was inserted painful in my hand. I was eventually wheeled down to the OR. I hated leaving my husband in my room, I was leaving him and would be coming back without our baby. The OR room was so bright, white, and cold. I was asked to shimmy over onto the operating table and in a few minutes I was out. I woke up back in my room with my husband by my side. I was in and out for a while and shivering again until I had warm blankets once again. After a few hours, a couple crackers, and some water we were told I could go home. I wasn’t ready, I had to leave behind my baby. It was incredibly heart-breaking walking out of the hospital. The nurse gave us a sheet of paper with some resource phone numbers and information on a group burial. After many phone calls in the days that followed, I was gutted to learn we could have had a private cremation had we told the hospital before my procedure. But we didn’t know this was something we could even elect to do. I wish I could have had something physical to hang on to, but we have nothing more than our 10-week scan photos.

In the weeks shortly after, I didn’t know what to call what happened. I very much wanted to bring our baby home, but we didn’t have that option. We were asked if we wanted to terminate, but no one ever said do you want an abortion. I had a termination, technically this was an abortion, but this was hard to even admit to myself at the time. There is so much stigma around abortion and what I now know as TFMR (termination for medical reasons). But why – I could do nothing for my baby other than prevent them from any pain, that was my only option. I couldn’t change the baby’s chromosomes.

As the world learned of the Roe vs. Wade leak, I just want to scream that I had an abortion. I was fortunate to be able to go to a local hospital with my healthcare team to have this done. We were treated with compassion and care along with way, and they shared how often this happens even though you feel incredibly alone. This did trigger me to share more of my actual story on social media. This needs to be shared, we shouldn’t feel stigma around baby loss the way we do today. Too many couples are going through this awful loss and feel so isolated.

About a month after my D&E, we received the genetic testing from our baby. An extra chromosome 13 was confirmed, trisomy 13. In addition, but unrelated, they found that the baby also had a Balanced Robertsonian Translocation between chromosomes 14 and 21. Knowing this meant myself or my husband could be a carrier which could affect future pregnancies. Our genetic counselor worked with our insurance to get the testing approved. This was a very challenging time for me waiting to get tested and then waiting for our results. If one of us was a carrier, we would have a much higher risk of having a pregnancy that is not compatible with life and likely either early miscarriage or having a nonviable pregnancy. I feel very fortunate that we both have 46 chromosomes and are not carriers. They did express that our chance of this happening again is low, but more than had it not happened the first time. Also, there is still a risk of Germline mosaicism, where the sperm or egg have a mutation that is not presented in the rest of our body but as of now, it is believed this was two spontaneous genetic occurrences. We were essentially struck by lighting twice.

I remember being annoyed that I would only have one ultrasound at my 20-week anatomy scan. I was annoyed that our baby was due September 11, it was grandparents day this year but also felt like it was clouded with 9/11. Never again will these things matter.  The idea of being pregnant after loss is challenging enough but now that Roe was overturned and my state no longer allows abortions for any reason it is terrifying. 

While I wish pregnancy loss and lethal fetal anomalies would not happen to anyone else, I know this is not reality. But what I can hope and push for is more compassionate and empathic care. That others feel that they can tell their family and friends the truth and not be judged. That our families and friends can be allies and support reproductive rights. And that all abortions and terminations for medical reasons are covered by insurance, at your local hospital, at any week during pregnancy because no parent is making this decision on a whim. This seems so basic but it really feels so unattainable in our current political state. Reality for me, is if I was in the same position 3 months later, my termination would not be covered at all by insurance, I would need to travel to another state and am very unclear of what type of hospital or clinic I would be able to go to.

To my family, friends, and wonderful online baby loss community, I see you and thank you so much for being vocal, for simply liking a post and being an ally around abortion care. To all those who do not, I see you as well. I don’t know if this is a I don’t talk about politics online but not saying anything to me about this or even simply not liking a post that includes the words abortion or termination hurts. It cuts deep. I feel like I’m wearing a scarlet letter and those who are silent, make me feel so unsafe.


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