Dear Humans of the Internet,

I want to be clear out of the gate on this one: I am *not* a doctor. I sell advertising. Prior to that I worked in retail and at a bar.

That said, I am a fan of medical dramas — ER, House, New Amsterdam, The Resident, Transplant, Code Black and Grey’s Anatomy. Yep, big fan.

My point is that I’ve seen enough medical drama to know what a good story arc looks like. This is important because when I think about this story — from beginning to end — it feels more appropriate for one of those primetime medical dramas. More importantly, not only did this *actually* happen, it happened to me.

I’ve come to think of it an adrenaline filled rollercoaster. If that’s true, it will probably make it an interesting or entertaining story to read. Since I don’t have to appease advertisers, or fit the details into a single 43-minute episode > I’m going to start at the beginning and just tell the story. It’s long. I’ll understand if you don’t stick with me until the end.

But before I get started, I want you to have this upfront —

The biggest lesson I have taken from this experience is simply: when terrible things happen in life, the best way to navigate your crisis is to focus on what you can control.

 

Feedback welcome,

 

Story Shortcuts

It takes time to waste time. Skip right to it!

Act One

The Conflict

The journey started in 2018 on a Thursday in June. My husband and I were excited to expand our family. Three children felt like the right number.

We were looking at the ultrasound photos and making gender predictions when the doctor interrupted to express concern about a condition called “cesarean scar ectopic pregnancy”. I recognized the term “ectopic” because ectopic pregnancies were popular plots in primetime television. That is why I was immediately confused. My TV medical knowledge had me thinking ectopic meant a pregnancy *in a fallopian tube*. Since we were literally looking at a photo the ultrasound tech had given us of our baby that was definitely located *inside* my uterus — I had a lot of follow-up questions.

I learned:

  • Ectopic actually means abnormal place or position.
  • Ectopic pregnancies represent 1-2% of all pregnancies.
  • A fallopian tube is the most common place for an ectopic pregnancy to occur.
  • A cesarean scar ectopic [or c-section ectopic] is a rare and often fatal type of ectopic pregnancy which occurs when the placenta implants over the c-section scar of a previous pregnancy. This is dangerous because as the pregnancy progresses, there is a risk that the placenta could grow through my c-section scar and fuse into my other organs. It could also tear my uterus open which would cause fatal bleeding and likely my death.

It was a lot to digest. More importantly, this was a suspicion and not yet a diagnosis.

In order to get confirmation, I needed to go to an ultrasound specialist in a different medical network for a specialized screening. The first available appointment was four days later. The only thing I did know for certain at that exact moment was that I was seven weeks and four days pregnant.

 

Quick pause for some pregnancy facts [since I didn’t learn this until my first pregnancy].

In Hollywood it is common to define a full-term pregnancy with the blanket term, “9-months”. In actual medicine, due dates are initially calculated as 40-weeks from the first day of your last menstrual period [LMP].  This is called “gestational age” and pregnancy progression is represented as XwXd. For example, seven weeks and four days pregnant would be represented as 7w4d using this format. A full term pregnancy is anything after 37 weeks [the start of your 9th month]. The ideal timeframe is 39-41 weeks. My estimated due date [EDD] for this baby based on my LMP was 2/3/2019.

This chart shows the complete pregnancy timeline based on this medical dating formula. I’ve included important pregnancy milestones to help demonstrate the progression of a fetus into a baby.

To pass the time between appointments, I conducted deep research on Google. All of the information I discovered was grim. There were a handful of heartbreaking stories from women reflecting on their choice to terminate their pregnancies because they recognized their own life was at risk. I also found numerous technical and emotionless medical journal case reports. They either described the data and process behind a specific treatment or reported a maternal death. I did not find a single instance of a cesarean scar ectopic pregnancy successfully brought to term. I did find a medical journal artical about a woman who refused to terminate because of religious reasons. Her uterus ruptured, she had a massive hemorrhage, and she bled out on the operating table at 39 weeks. The baby did not survive either. That meant that her other child/children were now without their mother.

My takeaway? Outlook not so good…

By the time Monday rolled around, I headed to my specialist appointment preparing for the worst. Even so, I was not ready for the diagnosis. The main talking points were that this is very dangerous and I was lucky “we” caught it early. Then the ultrasound specialist directed me back to my regular doctor who would outline next steps.

I immediately called my husband and left a message. He was on a cross-country flight for business. I imagine it was the worst voicemail he has ever received.

 

Quick pause to talk about the role of “a support person”.

Support, by definition, can come in many forms — physical, emotional, financial. I’ve had to navigate a lot of crisis throughout my life. I’ve come to call that experience, “Growing up Herzog“.  Jokes aside, in those times of intense challenge, I have learned how important it is to have support while you try to navigate through it.

I had a lot of support from friends and family through this entire experience. You know who you are and I hope you know how grateful I was to have you.

There is one person who supported me unconditionally and that was my husband. Even though this was happening to us, he recognized that it was also happening inside of *my* body. I suspect there were a number of times where he was on the brink of his own emotional explosion but I never saw that because he always managed to stay strong and give me the support I needed. Especially now, as I write this heartbreaking story. He is my person, he always supports me. He is also one of the first people to encourage me to focus on what I can control. That is one of the many reasons why I love him.

There are a few times in the story where he wasn’t initially available. Work was the reason for that every single time. He’s a small business owner and runs a pretty lean ship. Sometimes the choice for him was to participate or invest his time in something that would lead to revenue. 100% of the time we agreed he should prioritize revenue also happened to be the exact times in this story where something truly bad happened. It is important to me that you know that he wasn’t there because he chose not to support me, it was just ironically terrible timing.

 

It took me eight minutes to walk to my doctor’s office from the specialist’s building. I was able press pause on my sobbing in order to check-in with the receptionist. Then I was quickly ushered to a patient room, where I continued to cry while I waited for the doctor.

My regular doctor was not in the office. A colleague, who I had seen once before while pregnant with my second child, started by reiterating the main talking points — that this is very dangerous and I was lucky we caught it early. Then she walked me through three treatment options. I quickly realized all three were different termination protocols. I recognized each of them from the four days of deep Google research I had conducted in-between appointments. Although this felt different. Possibly because not only was this now real, it was happening to me.

It is probably a good time to let you know that when I am having a hard time understanding something, I find it useful to draw a similarity to something else that I do understand. Yes, that is the definition for “analogy” and I recognize that I could have just said, “I make a lot of analogies”. But I felt that it was important to describe the mechanics behind how my brain tries to tackle things that it originally cannot comprehend.

My analogy for this moment is the colorful spinning beach ball icon on a Mac — it indicates processing.

I think the doctor could recognize the perplexity in my face which is why she firmly stated¹, “we cannot allow this pregnancy to continue,” with a slight pause until we made direct eye contact, “your life is at risk.”

It took a minute for that information to register. In my mind I was thinking, “Where is Dr. Addison Montgomery-Shepherd? What about the unconventional and innovative solution? The one that had never been tried before and seems impossible but can be pulled off in between commercial breaks and ends with me holding my healthy baby.”

After I realized the magical baby doctor would not be coming to solve this problem, I pivoted from speechless to rapid-fire and relentless questioning.

I don’t remember everything I asked. I do remember that many of the answers centered around the data pool being limited because cesarean scar ectopic pregnancies were extremely rare. For instance, I learned that there was not enough sufficient data to answer this question: “If ectopic pregnancies represented 1-2% of all pregnancies, what percentage do cesarean scar ectopic pregnancies represent?”

I wasn’t satisfied with the “not enough data” response, so I rephrased the question to: “How many patients with cesarean scar ectopic pregnancies do you see a year?”

The doctor paused to calculate and responded that in their practice of about 1,200 patients, they typically see one cesarean scar ectopic pregnancy per year.

ONE! Or put differently, I had a 99.92% chance of *not* a cesarean scar ectopic pregnancy but ended up being the one patient in the entire practice to have one.

The Q&A went on for a while. Me not dying was at the core of most answers. Again, super rare, so not a ton of data available. The doctor walked me through the benefits and risks of not doing anything as well as each treatment option.

A summary —

Do Nothing

Description: Proceed as a high risk pregnancy.

Benefit: A baby, possibly.

Risk: The odds were not in my favor which was why this approach was strongly discouraged. On the one hand, this option *could* lead to the birth of a baby. But the data indicated that it was more likely the growing baby would cause uterine rupture and hemorrhage [significant blood loss], which could result in a blood transfusion, hysterectomy/loss of my fertility, or the death of both myself and the baby.

Surgery

Description: A variety of surgical options available. Each designed to immediately terminate the pregnancy.

Benefit: Immediate impact.

Risk: This was the most invasive and highest risk treatment option due to the possibility that this approach could cause uterine rupture and hemorrhage, which could either result in a blood transfusion, hysterectomy/loss of my fertility, or death.

Medicine

Description: A single or series of Methotrexate injections designed to slow down and eventually stop the pregnancy. My body would then absorb the terminated fetus naturally and similar to a miscarriage.

Benefit: The least invasive and lowest risk treatment option; best option for preserving future fertility.

Risk: Drug side effects such as: nausea, stomach pain, decreased appetite, vomiting, constipation, diarrhea, fatigue, dizziness, drowsiness, chills, fever, headache, tender gums, mouth sores and bleeding, reddened eyes, hair loss, swollen and tender gums, skin problems, liver problems, kidney problems and an increased risk of infections.

Hybrid

Description: A single medical injection administered directly to the fetus. This is designed to stop the pregnancy growth. The terminated fetus is then removed with a surgical procedure, typically the Dilation and Curettage [D&C] process, which is scheduled to occur within 48-hours of the injection.

Benefit: A relatively quick resolution.

Risk: Invasive and risky. Drug side effects + the possibility of uterine rupture and hemorrhage and the potential for a blood transfusion, hysterectomy/loss of my fertility, or death.

 

My quick assessment was simply, this sucks. It was a terrible situation and I wished I wasn’t the one who had to navigate it. It was clear that not only was this happening, what would happen next was a choice that I had to make. The longer I delayed that decision, the larger the risk to my own life grew.

In the absence of analogies, I’m a fan of visual aids. Especially when they contain factual data. I remember visualizing this scatter chart to understand my options and assist with the decision-making.

It was around this time that my husband called me back. His plane landed and he had listened to my message. I caught him up on everything I’d learned so far. I was still trying to wrap my head around it but I think explaining it to him in my own words helped me process what was happening.

We agreed that not dying was the top priority. The scatter chart was useful when thinking through the data, science and logic behind each treatment option. We determined that medicine was the clear choice — I was going to chat through next steps with the doctor and he was going to work on getting a return flight home.

The doctor explained that a Methotrexate multi-dose protocol was the preferred treatment plan in their practice. There were two phases and four steps in the protocol.

How it worked:

Phase One, Step One: Active

What: They would draw blood to establish an HCG baseline.

Why: HCG stands for Human Chorionic Gonadotropin and is basically a hormone present during pregnancy. It increases as a pregnancy progresses. The Methotrexate would stop pregnancy growth and under this protocol, declining levels of HCG are how success is measured. Every other day I’d have to return to the office for a blood test to track the HCG decline. My HCG level needed to decline 15% or more from the last measurement in order to move into Phase Two, Recovery.

Phase One, Step Two: Active

What: I would receive two high dose injections of Methotrexate and head home.

Why: Methotrexate is a form of chemotherapy commonly used to treat cancer, psoriasis and rheumatoid arthritis. It is used in medical elective pregnancy terminations because it stops cells from dividing. Pregnancy is essentially the division and growth of cells which is why this medicine is an effective treatment.

Phase One, Step Three: Active

What: The following day I would take a dose of Leucovorin Calcium.

Why: The toxicity of the Methotrexate dose from the day before needed to be neutralized. Anytime I received a dose of Methotrexate, I’d need to follow up with a dose of Leucovorin Calcium the following day. This would complete “the round”. I’d continue with this alternating schedule until my HCG level declined 15% or more from the previous HCG measurement.

When I asked how many rounds to expect, I was told there was not enough data to support a definitive answer. When I pushed back, I was told to prepare for at least three rounds.

Phase Two, Step Four: Recovery

What: Once my HCG level reached the decline threshold, we would shift to the recovery phase.

Why: The protocol was to continue tracking the decline until the HCG reached 0. We would move from the every-other-day schedule to weekly HCG testing and continue tracking until HCG = 0.  I have since learned, on average, this takes 40 days.

While the process sounded simple and straightforward, I discovered that thinking about an abortion and actually having one are two very different things. One is hypothetical and the other is irreversible. This was a wanted child in an otherwise perfectly healthy pregnancy. It was an impossible decision. My focus became minimizing as much collateral damage as possible.

When the nurse entered the room, I could only see her eyes because she was dressed head to toe in what looked like a makeshift hazmat outfit. 2020 has brought a lot of things with it, including the knowledge that the nurse was actually just wearing standard Personal Protective Equipment [PPE]. Regardless, it was a surprise and I’m confident the shock registered immediately on my face. She explained that the PPE was necessary because Methotrexate could be highly dangerous to the other pregnant women throughout their office. Even trace amounts could cause severe birth defects and/or fetal death so the PPE was more to protect them and not really necessary to protect me.

I remember that sticking with me as I signed the consent forms. Then I got one injection of Methotrexate to each butt cheek and about 90 seconds later the process was complete. I was 8w1d pregnant.

1: Earlier in this section I used a footnote citation. This is the only time I will use one and I’m putting this note here so that it does not get lost at the end of this story. I used the footnote citation when I put quotations around something I remember another person saying to me. Please view this as a mechanism for story narrative and not a direct quote. It is how I remember it. I believe it is accurate but it is possible the other person remembers it differently. Consulting a stenographer isn’t possible so I decided to proceed as if my memory were true. It is also for this reason that I do not refer to any other person in this story by their name. This is mainly for their security and privacy. If they decide to tell their own version of this story — I will link to it below. They are also welcome to comment in the comments section. I hope this makes sense and thanks for reading this footnote!

Quick pause for an important reminder about abortion legislation.

In 1973, the Supreme Court decided that the “right to privacy” protects a woman’s right to control her own reproductive decisions. Unfortunately, the legislation did not protect this right for the entire duration of a pregnancy. Regulations were put in place to restrict this right as a pregnancy progresses. For instance, pregnancies less than 13 weeks generally had no restrictions, 14-26 weeks had moderate restrictions requiring a medical reason for an exception and at 26 weeks or later, abortions were prohibited except if the mother’s life was in danger.

From 1973-2018 there had been no legal change to this constitutional protection. However, over the last two years, significant legislative changes across this country have put the protection of this constitutional right at risk. For instance, Alabama passed legislation outlawing abortion completely unless the mother’s life or health was at risk. Similarly, Georgia, Kentucky and Ohio have successfully passed legislation that prohibits abortion after the sixth week, unless the mother’s life or health was at risk. Missouri passed a comparable law prohibiting abortion after the eighth week, unless the mother’s life or health was at risk.  Additionally, these 14 states — Arkansas, Florida, Iowa, Louisiana, Maryland, Minnesota, Mississippi, North Dakota, Pennsylvania, South Carolina, Tennessee, Texas, West Virginia, and Wyoming — are actively working to pass equivalently restrictive laws or unblock legislation that passed and was then blocked by a court order. Most recently, Supreme Court Justice Amy Coney Barrett refused to answer direct questions about her perspective on abortion and specifically Roe v. Wade throughout her confirmation hearing. She was confirmed on October 26, 2020 — eight days before the 2020 Presidential election. She is a Catholic, a conservative and is the fifth Supreme Court Justice to be appointed by a president who lost the popular vote. #democracy

I am absolutely blown away by how significant the threat to maintaining the constitutional right to control one’s own reproductive decisions has become. I did not realize how many states and legislators were actively trying to restrict or outright eliminate it. Until recently, I was not paying attention to this conversation. I believe this was simply because I grew up in in a home with pro-choice parents and in a state with democratic and pro-choice governors dating back to 1985. For the record, I was born in 1982.

I firmly disagree with the opinion that government should have a voice in this conversation.  I believe this is a basic human right — regardless of the circumstance. Not only do I now understand how difficult this decision can be, I have empathy for anyone else who faces this difficult choice. It is for this reason that I made the decision to share this deeply personal, traumatic and life-changing story.

 

I was alone and emotional when I left my doctor’s office. I cannot imagine what that experience would feel like if it were bookended by pro-life protesters with a mission to create emotional and physical obstacles for me every step of the way. Torture probably doesn’t accurately describe it. If you had to navigate something like that on top of the emotional rollercoaster that is abortion, I am so sorry that happened to you. If you haven’t — take 30 seconds to get a glimpse of their experience.

I briefly spoke with my husband on what seemed like the longest 15-minute walk to the ferry terminal. He was about to board his flight home. That was the best news of the day, by far.

I quickly texted my boss [whom I had not yet told I was pregnant], to tell him I would be unavailable for the rest of the day due to a medical emergency. I stated that I would triage open items and loop back later in the week with a more detailed update. I then shot off a few emails cancelling meetings and letting clients and colleagues know that I while I was ok, I would be unavailable due to health reasons until further notice. I hoped that would be enough information to address my absence but avoid further follow-up Qs.

I was physically and emotionally exhausted by the time I boarded the ferry [same one that was made popular by McDreamy if you happen to also be a Grey’s Anatomy fan]. I headed straight to the bow. It was the only place I could think of that could afford me something that resembled privacy; I could feel the ugly cry coming.

When I got home, I wanted to make a beeline for my bedroom to hide under my covers and cry until my husband got home. However, when you have two children under the age of five — that kind of alone time is rare. With his flight time and the commute home from the airport, I needed a childcare plan to get through the next 8 hours.

I shared a very high-level explanation with our Au Pair hoping she would agree to shift her schedule until my husband returned. I had forgotten she had school on Mondays and had a hard stop at 4pm.

I quickly pivoted to plan B — my parents. Theoretically, this was a solid idea but my 70+ parents had their own long list of health problems. Running after active little humans was generally a challenge for them. I wasn’t convinced adding them to the mix would actually be helpful.

I decided beggars really can’t be choosers, ordered a pizza, and asked them if they could swing by to feed the kids dinner, watch them while they watched TV and then help with the bedtime routine.

The pizza arrived before they did which gave me extra time to think through exactly what I was going to share. They too did not know I was pregnant. This was because after surprising both sides of our family with a pregnancy announcement during family pictures the year prior, I had a miscarriage at 11 weeks, followed by a D&C.  That experience added new perspective to #AwkardFamilyPhotos for everyone. It was also why my husband and I decided not to tell anyone about this pregnancy until the second trimester. At the present moment, this seemed like a great call.

Once they got settled, I uncomfortably shared the high-level explanation: “I have an extremely rare and fatal type of pregnancy. None of the options are great but the goal is to minimize risk and avoid death with several rounds of medication. I asked you to help out with the kids today because I had my first dose a few hours ago and am solo-parenting until after bedtime.”

I could tell by my mother’s expectant grandparent glow that she stopped listening after I said, “I’m pregnant”. This was confirmed when she responded, “I’m so excited you’re pregnant!”

I decided to take a more direct approach. I reiterated the message substituting “several rounds of medication” with “abortion”. I could tell by the shock on her face that this message was clearly received. I wasn’t in the mood to console other people about how to process my abortion, so I highlighted the pizza, turned on Peppa Pig, and abruptly ended the conversation by stating I was going to lay down and rest.

Quick pause to recognize my privilege in this situation.

This was a terrible experience. It was made easier because I had a job that I could excuse myself from via email. I had a boss who was understanding and required no further follow-up. I had health insurance and paid sick leave to minimize the impact to our finances. I had flexible childcare. Most importantly, I had a lot of support. I expect this experience would have been immensely harder without any one of these things. If you experienced an abortion without access to something on this list that you needed, I am so sorry that happened to you.

I quickly learned that the portrayal of how chemotherapy effects patients across television is accurate. Nausea — check, vomiting — check, appetite changes, diarrhea — check, check.

I was in the bathroom vomiting by the time my husband got home. While I don’t have very many vivid memories between his arrival and our trip back to the doctor two days later, I do remember that in between Methotrexate rounds I developed my own vicious cycle at home. It was basically bedrest and our 5ft x 5ft bathroom closet. With the exception of the occasional shower, I didn’t travel too frequently outside that loop for weeks. #PartyTime

 

With hindsight on our side, we planned much better for Wednesday’s trip to the doctor. To avoid running into people we knew on the ferry and to mitigate the chance of unexpected emotional outbursts in front of strangers, we decided to spend the $40 round trip plus $12 parking to take the car with us on the journey. To put this in perspective: minus the ferry, our trip was 1.5 miles. Under normal circumstances taking the car would be an expense that the Jewish mother in me would never justify.

By the time we got to the patient room, my anxiety was off the charts. When my regular doctor entered the room her familiar face brought with it some much needed comfort. She was patient and kind as we peppered her with rapid fire questions — many that we already knew the answers to. Her calming energy brought harmony to our chaos.

In total, I received four Methotrexate rounds before moving to the recovery phase.

This chart summarizes the data behind that journey:

That last round on July 2nd was a real slap in the face. We had decided to push the HCG test out by one day since technically “every other day” fell outside of normal business hours [on a Sunday].  I remember bursting into tears when the data came back showing I missed the 15% threshold by 1%.

I proposed skipping the 4th injection, rounding the data up and calling it good. [The doctor responded with a hard no.] I did this because the chart does not represent is how miserable the Methotrexate made me feel. As previously mentioned, I spent weeks in a vicious cycle of bedrest and our bathroom closet. I was working through what seemed like every drug side effect. That’s back-to-back-to-back days of nausea, stomach pain, decreased appetite, vomiting, constipation, diarrhea, fatigue, dizziness, drowsiness, chills, fever, headache, tender gums, mouth sores and bleeding.

Around the third round I woke up with bruises all over my body. Concerned, I called the doctor to report the finding and learned that in very rare cases, bruising is a side-effect of Methotrexate. Of course I would be the patient who experienced this rare side effect. I remember joking about how rich I would be if I had the same luck playing the Powerball as I was having medically.

Putting the physical symptoms aside, the chart also does not capture the mental impact the experience was having on me. Terrible anxiety. Depression. Night sweats and horrible dreams about the baby suffering. One very specific recurring dream where I’m dressed in a red dress like a handmaid, put on a public trial and forced to wear the letter A, for abortion, and then punished by Aunt Lydia in a variety of horrific ways for having said abortion. #HandmaidsTale #ScarlettLetter

I think it’s clear that it was pretty rough. I wanted it to end. I wanted to move forward. I think that I recognized that the “Recovery Phase” was more than just the last step in the Methotrexate multi-dose protocol, it was the first step in my *actual* recovery from this tragic experience.

When the nurse in the makeshift hazmat suit/PPE came in to administer the medicine, I wanted to believe this was the last time I’d ever see her in this capacity.

Quick pause to recognize those in my life who made the trek through chronic and/or terminal illness.

Not only did this experience give me perspective and empathy for anyone going through a recurring medical treatment — I have mad respect to anyone who does that while maintaining a positive attitude. My own parents have battled Multiple Sclerosis, stage 4 cancer, bi-polar disorder and a long list of chronic pain that led to more challenges with opioid addiction. I have friends and family who have navigated dementia, Alzheimer’s, Parkinson’s, a brain tumor, stroke and a diverse assortment of cancer.  These people who had to confront a serious medical problem inspired me. Their strength, endurance and determination was top of mind for me throughout my experience. They taught me to focus on what you can control and to focus on doing the best that you can. Thank you for this wisdom.

If you are actively en route through a health challenge, I am so sorry that you are going through a difficult time. I hope that sharing what I learned from being in your position will help you get safely to the other side.

I was beyond thrilled to move into the recovery phase on July 9th. I returned to my regular work schedule the following week but I was still pretty sick from the treatment. My boss approved a temporary work-from-home-as-needed schedule after a few very public incidents of what I’m sure people attributed to morning sickness. That was very helpful. He was very supportive.

By the end of July the data indicated my HCG was on a consistent downward trend. To save me the hassle of schlepping into the city so frequently, we moved to bi-weekly HCG testing in August. Each day I felt a little better and a little closer to my regular self. This chart summarizes the data behind that journey:

Act Two

The Complication

Around Labor Day Weekend, everything changed. We were camping in the Olympic National Park and cell service was spotty. I initially ignored the voicemail message chalking it up to an appointment reminder. But after listening, a day or so later, I knew the short and simple voicemail requesting I please call the office as soon as possible was really a clue that something was wrong. Again, not a doctor. But I knew enough to know that they like to deliver bad, unusual, or potentially dangerous news in real-time and preferably in person.

I immediately called and spoke to a medical assistant who stated she had been expecting my call back [also not a good sign]. She explained that my doctor was in surgery but had asked I come in for an HCG check as soon as possible. I explained I was out of town and then asked a lot of very detailed follow-up questions. I do a lot of interviewing in my professional life — we call this process “peeling back the onion”. She wasn’t prepared for that intense line of questioning; I got down to the core with her pretty quickly. From the information she did share, I gathered the concern was the HCG decline in my last test was smaller than expected. The cause was unknown and for this reason, I needed to come in for another test. We agreed that since I was not in immediate danger, I would come in after returning from our trip.

A few days later, on September 6th, I found it difficult to hide my tears in the waiting room. I did not prepare properly for the emotional reaction that came from sitting in the middle of a room surrounded by other pregnant women. I tried to distract myself with my phone but suddenly found myself in the pregnancy tracking app I clearly should have deleted. Under other circumstances, I would be 18w4d pregnant with my third child and I couldn’t seem to get past that fact in that exact moment.

After a blood draw and another wait in a smaller room surrounded by instructional reproductive posters and gynecological training manikins, my anxiety was off the charts. I could sense the uncertainty when my doctor entered the room. She was direct, delivering the news that my HCG level had increased since August.

“Seriously?”

She was serious and explained that the increase was an indication of growth.

Blergh. My mind was racing.

“What was growing? The baby? Was the baby still alive? How is that possible? Why is this happening? Did you know this was going to happen?” [I probably didn’t capture them all but you get the general concern.]

She explained that since cesarean scar ectopic pregnancies exist inside the uterus [where pregnancies are supposed to occur] and since my HCG levels had been declining as expected under the Methotrexate multi-dose protocol, this was likely a sign that the placenta was still growing. While rare, the hypothesis was this was a completely reasonable explanation and the best next step was to resume the Methotrexate multi-dose protocol immediately.

More tears. This was a real gut punch. I was just starting to feel normal again so the thought of getting back on the Methotrexate rollercoaster was intimidating. After a few more clarifying questions, I understood that she did not believe my life was in immanent danger, and so I countered with a proposal.

I explained that after my 2017 miscarriage, I started a blog [www.soonliving.com] to produce something productive vs. drinking a ton of wine and binging Netflix. Prior to this current disaster, I had invested in blog training and an in-person conference which would take place in Florida from September 13th – September 17th. I was really looking forward to the event and my worry was that if we started the Methotrexate today, the side effects would prevent me from being able to participate in the conference. “I need this,” was my closing argument.

She was quiet for a minute as I braced for more disappointment. To my surprise, she outlined her terms: *if* I came straight to the office from the airport after returning home from the conference and *if* I promised to seek immediate medical attention at any sign of fever, abdominal cramping, and/or bleeding *then* she would not object to my attending the conference.

I agreed to her terms and left quickly before she changed her mind.

 

Act Three

The Climax and Resolution

The Activate: EBA Live conference was incredible. I met hundreds of other bloggers, learned a ton of best practices and heard some pretty inspiring stories. For instance, Abby Rike Rockenbaugh spoke about losing her husband, daughter, and newborn son in a car accident while she was at the doctor. She talked about her deep depression following that unimaginable loss. She walked us through her recovery, her experience on the Biggest Loser and how she turned tragedy into something meaningful — a way to help others through their own dark days. I’ve thought about her story a lot since returning from that trip. She is one of the reasons I was able to anchor myself in this crisis.

As promised, I headed straight to the doctor’s office after my flight from Orlando landed. I already knew that my regular doctor was out of the office so it was not a surprise when a different doctor stepped in to deliver the results of my most recent HCG test. She shared that while the change was very small, it had increased to higher than the HCG level in early August.

“Seriously?”

She was also serious. Same talking point as my regular doctor — this is a sign of growth. She reiterated how important it was to resume the Methotrexate protocol. This chart represents that data:

,That definitely killed my blog conference high. I immediately became nauseous thinking about the obvious question — how sure are we that the baby isn’t what was growing? I asked this doctor to help me understand what *exactly* was growing inside of my body.

She reiterated the working hypothesis —  that given all the Methotrexate I already received it was very likely this was just remnants of the placenta that was growing. She then shared that she once had a patient with a cesarean scar ectopic pregnancy who was administered the Methotrexate multi-dose protocol and had a sudden increase in HCG after a steady decline.

That got my attention. I’d never actually had access to another patient whose data we could discuss in real-time. This was one degree of separation and I had about 10,001 questions.

She reiterated how rare it was and highlighted how a second rave of the Methotrexate multi-dose protocol addressed the HCG increase for her patient. I also learned that the other patient received two rounds of Methotrexate before meeting the 15% decline threshold again. I thanked her for the additional information. It was helpful to have that context in order for me to set expectations for myself on what this next Methotrexate experience might look like.

She was almost out the door when I asked her, “why haven’t I ever received another ultrasound to confirm the treatment was effective?” I went on to explain, “I’ve been having the worst dreams about slowly torturing my child, and that based on this new data I was having a really hard time ignoring them. Was it a cost thing? Was it because what would appear on the screen would be disturbing?”

She seemed surprised by the question. She simply reiterated that we were following the Methotrexate multi-dose protocol and that an ultrasound following the start of that protocol was not part of the process.

Not being a doctor, I didn’t push back. She left and shortly after the nurse in the makeshift hazmat suit/PPE came in to administer the medicine. I was out the door two minutes later, headed home to brace for the disaster I knew was headed towards me.

About 10 minutes later, I was surprised to see an incoming call from my doctor’s office. It was the doctor I just saw. She stated that she discussed it with my doctor and they decided they wanted me to move forward with another ultrasound. She asked me to call the same out-of-network ultrasound specialist to schedule a specialized screening.

The first available appointment was four days later. It was a bit of déjà vu but I tried not to think about that. By the time I got to the patient room, my anxiety was out of control.

When I’m nervous, I talk a lot. It’s a coping mechanism. Sometimes I just share personal details about myself or my family, other times I ask a lot of questions. In this appointment I did both.

I started by asking the ultrasound tech if she had ever seen a cesarean scar ectopic pregnancy. She had, one other time. I then asked her what happened.

She explained that their office specializes in high-risk or unusual pregnancies and so they see patients from all over Washington State, as well as Alaska, and parts of Idaho. She explained that since I was in Seattle, it was relatively easy for me access to a variety of top-tier medical professionals. This was not the case for her other patient who was from a rural part of Idaho. Her doctor suspected the cesarean scar ectopic pregnancy but referred her to another doctor in Spokane to confirm. That doctor agreed with the suspicion but then referred her to this Seattle ultrasound specialty office. “It’s a rare diagnosis, and that causes doctors to want to defer the patient to a more qualified expert. I get it,” she said, “it’s complicated and that makes people nervous — but we were the third place that patient had to go before she got some answers. What a terrible experience for her.”

That resonated with me. 1000%.

I asked her what happened and she told me that it’s already a very dangerous diagnosis. She was pretty far into the pregnancy so they decided to terminate the pregnancy immediately using a ultrasound guided KCL injection [a potassium chloride in sodium chloride injection directly into the fetus’ heart]. The patient then immediately had surgery which ended with her having a hysterectomy.

That struck me hard, like lightning. I remember looking her in the eye and telling her my journey had also been long and arduous. That there had been a lot of confusion and uncertainty, and whatever happened, to please be direct and tell me the truth.

She agreed and then started the ultrasound. I was babbling on about my blogging conference and a recipe I was about to publish, when she interrupted me. She said, “Remember earlier when you asked me to be straight with you?” I nodded. “I’m sorry to tell you this but the baby still has a heartbeat and I have to excuse myself because I honestly don’t know what to do.”

“What the fuck.” [We are at the point in the story where I start swearing profusely.]

She apologized again and left the room. I immediately called my husband to relay the news.

He had the exact same reaction that I did, which was to swear profusely. Neither of us really knew what to do from there. I spent the next five or so minutes alternating between being angry about the situation, and contemplating what I could have done differently.

When the tech returned, she brought a doctor with her. The doctor explained that they spoke to my doctor’s office and decided that I should head over there but only after they gathered more information and images here. They were working on a plan and needed this information to create that plan.

Sure. That made sense. [I actually don’t think I responded.]

The doctor left the room and the tech resumed the ultrasound. I was definitely in shock. I don’t remember much. The tech called the doctor back in one or two more times, mainly because she genuinely did not know what to do. It was clear from their energy that neither of them did.

It occurred to me at some point to ask the obvious question, “How far along am I?”

“20w4d based on your LMP…but the baby is measuring at 17w3d.”

I didn’t know what the fuck she was talking about. I understood “20-weeks” and “LMP”. Gestational age dating worked for my other children — so that was the data I was going to go with today — which meant I was at *the midpoint* in this pregnancy.

“Unfuckingbelievable.”

After the ultrasound, the doctor came back to update me on the communication between doctor offices. My doctor’s “team” [I remember her saying] was still working on “the plan” and thought I should head home to wait for them to call me with next steps.

I asked for clarification — home, home? Like make the 45-minute ferry commute home and wait there, or leave this office and don’t yet go to the other doctor’s office, but stay close by in case there’s an emergency while “the plan” is being finalized?

It was the latter.

I texted my husband to tell him the very unhelpful update, and then immediately called my aunt — who is an actual doctor. It felt like I was at the center of a Grey’s Anatomy episode — and not just because I was standing in the middle of a hospital in Seattle. I knew I could count on her to tell me what the fuck was actually happening.

She picked up right away but told me she was about to go into surgery. I gave her the high-level summary. She was calm and told me she’d call me as soon as possible.

I wasn’t expecting that. Now I was standing on the street. Next to the hospital. Not really sure what to do.

I started to panic. My heart was racing. I got really sweaty, and dizzy, and started hyperventilating. Then I made it worse by trying to figure out if what was happening was an actual panic attack or something worse. I sat down on a bench to do some deep breathing. Something I picked up from one of my medical shows.

It worked.

I’m not sure how much time actually passed. But then I realized that my brother was the only other person in the city I felt comfortable talking about this with.  I texted him to call me immediately.

He called me back within 30-seconds. It was a surprise, cause he is my younger brother, and he is usually not that responsive. I think that is why I started the conversation with, “I’m surprised you called me back so quickly.”

He explained that I’d never texted him to “call immediately” and so he thought that meant one of our parents had died.

“Fair assessment. They’re fine.”

Then I explained that the problem wasn’t that someone died it, was that they didn’t die. That I just found out I was still pregnant and am standing in the middle of the city waiting for the doctors to tell me what to do next. I was beyond hysterical, I’m not even sure he understood everything I said. He told me to text him an address and that he would be right there to pick me up.

Quick pause.

I later found out he was actually in the middle of leading a meeting when he got the text. He saw it, finished his sentence, and said he needed to step out for a minute to check on something. We spoke. He came back in. Told everyone he was ok but there was a family emergency, and that the meeting was over. He picked up his computer and said he would check back in when things were under control. Then he left. 

His behavior is absolutely what you should do if someone you care about asks you for help with their crisis. It feels like this should be obvious but 2020 has made me question a lot of things that humans do or don’t do. So I felt it would be a miss not to point this out.

,,,The next call I got was from my doctor. It was her day off but her colleague, the doctor from Monday, had caught her up on the ultrasound results. I asked her to help me understand what was happening and why. She stated that it was a complete shock not only to her, but to her entire medical practice.

I explained that I was literally standing on the street and asked for a plan. Should I go home? Should my husband come here? Did she have rough idea of what the plan was? A timeline?

There is a lot about this day that I wish I could remember to forget. Her response was unfortunately one of those things I will always remember. She said that she was, “consulting with experts across the country on treatment options.”

It’s not a good sign when your doctor tells you they aren’t exactly sure what to do next. I rephrased the question, “Am I going to die?”

She assured me I was not. She reiterated that while this was completely unexpected, and that the team had been unable to find any other cases reported like mine — I basically had three options.

Option #1: Continue with the Pregnancy

I don’t remember my exact reaction but I definitely swore. This is not verbatim but it was something like, “Seriously? If that’s the first option then I’m going to need you to help me understand why the *FUCK* didn’t we choose to do that in the first place? Especially considering we spent the last 12 weeks navigating to this shitshow. *Also.* What kind of baby is going to come out after hazmat lady injected toxic medicine into me — not once, but *FIVE FUCKING TIMES!!??!!!*

She kindly absorbed my rage and acknowledged my concerns were valid. She explained that based on the gestational age, and her commitment to transparency, she was presenting this option so I could consider everything.

She confirmed that all the same risks of uterine rupture and hemorrhage were still present, and if I moved forward with this option it could still lead to a blood transfusion, hysterectomy/loss of my fertility, or death. She also confirmed that because of the heavy direct exposure to Methotrexate there was little to no chance the baby would survive.

I’ve had a lot of time to reflect on this story and this moment is the best example I can highlight of patient/doctor trust. My doctor is the kind of doctor who makes medical recommendations independent of her own religious beliefs. Incorporating religious bias into science and medicine is extremely dangerous. In order to properly maintain trust between patients and doctors, I believe these two things must be separate. It is also for this reason that I believe political policy and theology should be kept separate.

I said no; next option. Unfortunately, when I learned about the next two options, it became clear that the hospital’s medical hierarchy did not share her commitment to separating religion from medicine.

Option #2: Surgery

She explained the ultrasound raised concerns with the uterine muscle thickness and showed a placenta previa which is when the placenta grows over the cervix. The hypothesis was that with placenta previa, two prior c-sections, and my current c-section ectopic pregnancy, that it was very possible I also had placenta accreta. With an accreta, the placenta grows into the uterine wall and cannot be removed from the uterus properly without a hysterectomy.

A hysterectomy was so final. I asked her to tell me about the third option.

Option #3: Alternate Plan

This was still surgery and would only work if I did not have an accreta. With this option she would deliver the baby similar to a standard c-section. She emphasized that if saving my fertility was a priority, then this was the only option. I fired off a few technical follow-up questions, and I will never forget her response. She said she didn’t know, “not because as surgeons we can’t do this surgery but because this surgery has never been performed.”

That took my breath away. It was also that Dr. Addison Montgomery-Shepherd moment I had been looking for earlier. It was clear now that I’d much prefer to watch it unfold on any literally any screen/show vs. it being one of my only three choices.

I asked if this option put my life in additional risk. It didn’t. Mainly because if they found an accreta, which they could only confirm in surgery, they would pivot to Option #2 and perform the hysterectomy.

Based on this information, I chose Option #3 and asked about next steps.

There were a lot of really shitty parts to this day. This next part is the third shittiest. *Consider this a warning label*.

My doctor took a deep breath, as if she needed to remind herself to remove her bias before delivering the information. She explained that because the hospital was owned by a Catholic institution, and because the baby’s gestational age was into the second trimester, I could not enter the operating room [OR] with a baby that had fetal heart activity. She acknowledged the absurdity with this policy — especially in this use case. That the facts were my own life was at risk and that it was highly unlikely the baby would survive. Even so, the hospital was controlled by a Catholic perspective, and that led to a firm policy which did not allow intentional second and third term abortions. As a result, I needed to first go back to the same out-of-network ultrasound specialist for an ultrasound guided KCL injection. This procedure would stop the baby’s heartbeat. She wanted me to get the KCL injection that afternoon while she worked on booking an OR for the surgery either immediately following the KCL injection, or early the next day.

If you were curious, it registered immediately. The next step in this horrendous nightmare was to watch someone stick a giant needle through my stomach, into my uterus, and into my baby’s heart. I would then stand by while they injected a chemical solution that was designed to kill my baby. #LifeGoals 

“I’m going to need a Xanax,” was, I believe, my official response. I was feeling overwhelmed. I know that’s what prompted me to ask for it. That said, I had never taken Xanax before. I only knew about it from television.

My brother had arrived. We agreed that I’d hop in his car and head to her office. Xanax was a controlled substance, so the pharmacy required a physical prescription. We’d head over to pick that up and she would work on scheduling the KCL appointment.

No recollection of the drive over to her office whatsoever. My brother offered to head up while I stayed in the car. That was a great idea since I couldn’t imagine keeping my shit together in the waiting room. While he was gone, I called my husband to recap the plan. He was going to figure out a childcare strategy, pack me a bag, and then catch the next ferry. I was going to text him my appointment time and where to meet. When my brother returned to the car, he showed me a sticky note with the KCL appointment time. We had 90 minutes until my appointment and decided to start by getting my prescription filled.

I’ll be honest that the next 90-minutes are a blur. Part of that was the Xanax, part of that was that I just let my brother do everything for me. I remember going through the motions: parking, pharmacy [drop off], Espresso Vivace [waste time], pharmacy [pickup], parking at the medical building, elevator, waiting room, sign consent forms, wait. I feel like it’s the closest thing I’ve had to an out-of-body experience.

I felt instant relief when my husband entered the waiting room. My brother is a great support person, but he was not my husband. The three of us went back to the patient room together.

Then it was like we got the band back together. Same ultrasound tech. Same doctor. #JamSession

The doctor explained the procedure. It sounded simple and straightforward but also felt like such unfortunate déjà vu. Here I was again at the crossroads of thinking about an abortion and actually having one. This time it just felt like everything was collateral damage. I wanted it to be over quickly.

The doctor got organized. She asked if I wanted to close my eyes or look away. I did but I wouldn’t. I decided that if the baby could make it this far — through 20 weeks of pregnancy and five rounds of Methotrexate, then the least I could do was be present when everything came to an end.

So I squeezed my husband’s hand and I sobbed. Then I watched her stick the long needle into my stomach, through my uterus and into my baby’s heart. I squeezed his hand tighter as I watched her inject the medicine.

But nothing happened. I could tell it was not an ideal outcome. She reloaded the syringe and repeated the process.

Still nothing. She awkwardly excused herself and left the room. I remember thinking, “is this normal?”

It wasn’t. But I’d been swimming in abnormality for so long — at this point, what was?

She came back and loaded the syringe again. Seriously? Three times? That was the second shittiest part of the day.

Then she repeated the process again. We waited. Then she said, “That was it. That’s the money shot!”

That was undoubtedly the shittiest part of my day. Obviously because I just intentionally killed my child. But also, who says that? She did. I checked. Both my husband and my brother confirmed. It was not the Xanax. It certainly was inappropriate. I do chalk it up to nerves. Or bad training? It’s probably pretty rare that a guided ultrasound KCL injection requires three rounds. I imagine they don’t plan for that scenario — let alone provide coaching on how to navigate it properly with a patient.

Another blackout. I think my brain just couldn’t handle anything else. They put me in a wheelchair and the doctor escorted us across skybridges and through two or three medical buildings. She took us into the main hospital. Then to the Labor and Delivery wing where they put me in a room that looked a lot like the other ones I’d been in before.

That was different. That was beautiful and filled with the joy of becoming a parent. This was sad and filled with immeasurable grief that I wouldn’t wish on anyone.

At some point some doctor came in. She explained that my surgery was scheduled for the next morning.  She would be one of the surgeons. My regular doctor and a few others would also participate. They would go over the details again tomorrow. For now, they were going to keep me overnight, as a precaution, in case they needed to react more quickly. She suggested I rest and left.

Then my aunt showed up. I had totally forgotten about her! I guessed my brother was managing all the family communication behind the scenes.

The three of them made a plan. My husband and brother were going to go back to my house, and my brother would help out with the kids. They’d pack, and return with the kids in the morning so we could be together before my surgery. The kids would spend the weekend with my aunt and uncle while my husband was with me. My brother would oversee supporting my parents through their reaction and fear of the situation. He would also be available to step in and support elsewhere when needed.

At least I think that’s how it happened. I was definitely on drugs. Between the Xanax and some unexpected pain meds, I don’t remember much else until the next morning.

When I did wake up, my mind was very clear. It quickly pivoted to a deep examination of the last 12 weeks. As a strong supporter of visual aids, I thought it would be helpful to update the chart to include the gestational age of my baby. This will make it very clear for you what I already knew, that the baby was with me at every step of this very unfortunate journey:

I don’t remember much about what happened next. The nurse eventually came in because alarms were ringing. After more medicine and time, I calmed down.

This was great timing because my kids arrived shortly after that. We read books and drew pictures in between various doctors coming in to prep me for surgery.

It was time to leave for pre-op. I could only have one support person come with me — which I obviously wanted to be my husband. I assumed he planned for this and brought the Au Pair with him. He didn’t. He explained that he didn’t want to scare her as she had only been our Au Pair for 12 days. Fair enough. 

Tough call on who gets the award for most shocked — my husband when he realized he hadn’t thought through this part of the childcare plan or my brother when it became clear that he was suddenly in charge of two small children. Either way, it brought me a little humor.

I was pretty stressed about the surgery in pre-op. When I’m stressed, I like to get organized and make detailed plans. It’s a coping mechanism. I think it gives me a sense of control. Unfortunately, it’s the opposite of what my husband likes to do in this type of situation. So suddenly trying to organize finances and make an outline for what he should do in case I died — well, it was not helping him stay calm.

The next thing I remember is my husband consoling me in my hospital room.  Several hours had passed and the surgery was complete. Apparently I was inconsolable when I learned a hysterectomy was the only solution. My husband said it took a while for me to calm down in post-op after they told me.

At some point, my doctor came in to check on me. She told us about the surgery. Overall, it went well. There were three surgeons, an anesthesiologist, a scrub nurse, and a circulator nurse in the room. They quickly discovered there was a placenta accreta affecting delivery which is why the only option was a hysterectomy. The surgery itself was uncomplicated. The placenta had grown through the wall of my uterus but did not grow into other organs, such as the bladder or blood vessels. This was very lucky.

She then told us about something she called a “uterine window”. Essentially it meant that there was no uterine muscle over the amniotic sac and that the uterus was already separated, or in the process of rupturing. This was important because it indicated that uterine rupture was inevitable. It was fortunate that we operated when we did given what would have happened if we did not have an ultrasound the day before.

Then I asked her about the baby.

She told us it was a boy. That the impact of the Methotrexate multi-dose protocol on the baby was clear. He had significant and severe birth defects. I gathered it was unlike anything she and the rest of the medical team had seen before.

She explained that the baby’s body was in the process of a diagnostic technique called “fetal pathology”. They would be studying the abnormalities and creating a formal report to document the “fetal demise”, a medical term I wished never became part of my vocabulary.

She advised us that the hospital would create their pathology report and then they planned to send the baby’s remains to the children’s hospital for a deeper review with more experienced pediatric doctors. She wanted us to be aware of this because once the report(s) were completed, I’d likely get automatic notifications and/or access to the documents. She did not want us to be surprised when that happened.

She also explained that many parents who experience a later term pregnancy loss find a physical goodbye is a helpful part of the grieving process. With the logistics involved in my surgery, that wasn’t possible. She did have some pictures of the baby that she could share with us if we wanted. There was no rush to decide. They were available but they were also very graphic and could be hard to process. She wanted us to know they were available but did not want to cause us additional pain.

I valued her genuine nature and ability to make me feel like a person, instead of just another patient. It reminded me of the day we met — when I unexpectedly went into labor with my first child.

Adding a stranger to the already unstable environment of first-time parenting can be tricky. We met. Then she stated that we would be headed to the OR for a c-section delivery. This was necessary because instead of head down, our baby’s butt was in its place. The position, known as breech, was dangerous because the baby could get stuck — putting both our lives at risk. I immediately appreciated her direct messaging. She had a special balance of empathy and confidence which was what we needed to overcome the fear, uncertainty, and doubt that comes with navigating emergency surgery. It was, for this reason, I decided to make her my primary doctor with my second child. I then followed her to a new practice where she ended up supporting me through my 3rd pregnancy and again with this final pregnancy/calamity.

Now. I went into that deep backstory because I wanted you to understand how I got into this mess in the first place. Think of it as a reminder that you can’t have a cesarean scar ectopic pregnancy without first having cesarean surgery. In my case, it was not elective but instead the solution to an otherwise serious problem.

According to the CDC, 1.2MM or 32% of recorded deliveries in the US occurred via cesarean in 2018. When I see that data, I have two questions: 1) How many of those 1,208,176 women will learn about a cesarean scar ectopic pregnancy because they are faced with the same difficult decision? 2) Is there anything I can do to help them?

In total, I was in the hospital for a week recovering. Quick shout out to all the doctors and nurses who worked on this case from start to finish. Your care and compassion made a significant difference — thank you.

My husband ended up staying with the kids because seeing me in the hospital left them pretty scared. I did not want to be alone so my aunt stayed with me one night, my brother another two, and then, to my surprise, my oldest friend flew across the country and stayed with me for three more. That was a pretty incredible thing to do.

I had a lot of visitors in the hospital. There was a lot of family. They even organized a birthday party to celebrate my son’s 3rd — as his planned celebration had been abruptly canceled for obvious reasons.

Friends came…Childhood friends. Adult friends. Work friends.

About halfway through the week, one of my closest friends visited. She surprised me when she shared that she just recovered from her own terrible pregnancy crisis. Her baby had anencephaly — which is a rare birth defect that impacts brain development. This too was a popular storyline across medical dramas, but I didn’t share that. Instead, I listened as my friend walked me through her crisis. How there is no cure and that babies born with the condition are either stillborn or typically survive hours to days following birth. She told me about when they found out. That the gestational age was right at the cutoff. They didn’t have a lot of time to decide. In the end, she was happy she choose the D&C — one more week and she would have had to take the baby full term. “It was hard. That would have been so much harder,” I remember her saying. I think about her a lot when I think about all the recent abortion legislation and how in another state she may not have had the same option to control how she responded to this crisis.

We both agreed it had been a crazy year. For each of us, and for our doctor. Her regular doctor was the same one as me. When my friend initially asked for pregnancy advice, I pointed her towards my favorite OBGYN. It was one of the first recommendations I gave her. If anyone asked me that question today, I would give them that same answer.

One of my friends set up a Meal Train before I even got home. The meals were very helpful and a huge thank you to the dozens of friends, neighbors and acquaintances who dropped something off.

Then there were more visitors. Some with food. Some with flowers. Some listened. Some shared their own stories. Stories of loss. Stories of tough choices. Secret abortions that they never told anyone about until now.

It took me about six weeks to recover physically. My employer ended up processing the leave of absence request as a maternity leave. Not only did this mean that I had a generous amount of time to recover, it was also completely paid per a recent maternity leave change policy. Whoever you are, in Benefits or Human Resources, thank you. Not only was that the right thing to do. It was the human thing to do and I will forever be grateful. Ironically, this was the longest time I had ever received of paid maternity leave. With my first two children the benefit extended eight weeks. I am so happy that my company recognized new parents need more time.

As long as this story is, the time has come to bring it to a close. I do want you to know that being able to talk about it, out loud and on the internet, did not happen overnight. It took months of reflection, and therapy, and tears, and wine. Most of all it took time.

One last visual aid — these are pictures of my family planting a tree.

 

The folks at The Living Urn made it very easy and our Willow Tree arrived quickly. We call it the Noah tree because that is what we decided to name him. For two years, Noah sat in an urn on the bookshelf in my bedroom. I put him there intentionally so that I could think about his journey. His tenacious spirit. But most importantly, to think about how he is someone who I would never get an opportunity to fully know.

2020 has been a year unlike anything I ever imagined. But as we approached September, something felt different. This year, I had enough emotional clarity to be ready to move forward. And so one fall afternoon, we dug a hole as a family and honored Noah whose name means peace and rest.

I honestly don’t expect people outside of my family and friendship circle to read this. For those who do, I will be curious to learn how many make it to the end. If we haven’t spoken in a while — feel free to drop me a line. I’d love to catch up.

For anyone still with me, I want to leave you with this. Another very important lesson this experience taught me was how to move ahead after surviving a crisis. I tried a lot of different strategies but the one thing that got me to today was simply: start where you are and try to move forward, just a little bit, every day. #control

If you have experienced a pregnancy loss or are struggling to make a decision about abortion — I am not a doctor. But I have been told I am a great listener and give solid advice. Feel free to drop time on my calendar if you ever want to chat. This offer is real, that link will drop 30-minutes on my calendar. Choose any option but “#control confidential 1:1” is for this specific purpose.

Epilogue

Alright. It’s Friday, October 30th. The year is 2020. We are in the middle of a global pandemic. In four days, I will have voted in my 7th presidential election.

I’m telling you this because the election is what prompted me to write this story and share it on the internet. This was after a friend passed along Haylie Grammer’s story — a woman in Texas who had to make a similar tough decision for her baby at 25 weeks.

She decided to tell her story because she read about Michigan Senator Gary Peter’s experience. He’s the first sitting senator to openly discuss his child’s abortion. The decision to share came in the middle of his own election cycle.

Then I came across Rabbi Jaclyn Cohen’s abortion story. Not only did she defend abortion, she highlighted that women across a wide range of backgrounds, economic status and faiths have them.

I then learned about Chrissy Teigen and John Legend’s pregnancy loss. [I fan over them both.] She first posted about it on her social media and I remember thinking of how hard it would be to go through something like that on the world’s stage. I admired her strength and was inspired by her willingness to openly share the vulnerability. Four days ago, she published an essay detailing her experience and describing her loss. I learned that she lost her baby, also a boy, at 20 weeks like I did. She never used the word “abortion” and I don’t think it is important to know anything more than what she has already shared. I imagine her decision to share this terrible experience has helped so many — I know it helped me, so thank you.

The last example that made it clear I could not *stand back and stand by* was this piece of legislation from Ohio that was co-sponsored by 19 Ohio legislators. It would require doctors to “reimplant an ectopic pregnancy into the woman’s uterus.” The bill went on to outline that those doctors who did not comply would face criminal charges.

To be clear, so there is no confusion down the line — this proposed procedure is not medically possible.

 

There could not be a better example for why politicians should be prohibited from creating laws about things that they do not have experience with or expertise in. If reimplanting an ectopic pregnancy *was* medically possible, I’m confident I would have chose to do that instead of the nightmare that I’m often surprised I actually lived through.

It was for this reason, writing became my top priority over the last 12 days. I took time off from work, have been sleeping very little and at times am so focused on publishing this story before November 3rd, that I forget to shower or eat. I haven’t worked this hard on anything since college. The stakes are much higher than finishing a term paper I had procrastinated on all quarter.

Quick pause for a review of presidential elections in the last 20 years.

It recently occurred to me that 20 years ago I voted in my very first Presidential election. The other guy won after some craziness with hanging chads and a Supreme Court ruling. He was the first president in my lifetime to win the election after losing the popular vote. The second guy to do that is our current president. That means that in one-third of the elections I have voted in, the candidate that became president failed to secure a majority support from voters. Those two presidents then turned around and appointed five of our nine current Supreme Court Justices. For the rest of their lifetime, those nine people will make decisions that impact everyone in our country. That’s insanity, not democracy. It’s also a problem that right now I know I cannot control.

I realized what I could control was trying to reach the undecided voter. It has been a popular call to action across all social media channels for weeks. Connect with undecided and/or Republican voters and do whatever you can to convince them they should vote for Biden. Tell them human rights are on the line. Make them understand that four more years of the other guy will probably mean the beginning of the fall of the American Empire. Or at least that’s what they will teach future generations when they examine the last 20 years of American history. Assuming we have a future — given that the earth is dying and our current president believes the environment is in the way of making money vs. recognizing that humans should partner together to save the environment while also making money from that effort.

 

Exactly eight weeks ago, I had spinal surgery. The reason is not important right now. What is important, is that exactly two weeks later, Supreme Court Justice Ruth Bader Ginsberg died. Since I was in the thick of my recovery, I had a lot of extra time to binge watch television. When the home screens of my favorite streaming services started promoting RBG and On the Basis of Sex — I decided to give it a go. I now understand the incredible impact Justice Ginsberg had on equalizing opportunities for everyone. I’m just sorry I never had the opportunity to let her know how grateful I am for that support. #NotoriousRBG

That led me to discover Mrs. America which was an excellent examination of the battle to move the Equal Rights Amendment across the finish line. I finished that in two days.

I sensed my husband was feeling left out of my streaming party, so one night we watched our first movie in months — John Stewart’s Irresistible. Highly recommend — it opened my eyes to the machine that has become American politics. Imagine what we could do if 10% or even 1% of the money our presidential candidates raised this year went to fund a program that directly benefited the American people instead of this very exhausting and negative theatrical production. This tracker shows the current tally at $3.08 billion.

I was suddenly awake and paying very close attention to politics. I consumed news, followed a variety of public figures on Twitter and got connected with a diverse collection of the electorate on TicTok. This was what motivated me to do anything and everything I can to ensure my daughter can retain control of her own reproductive decisions.

I’m honestly pretty terrified that I just admitted to the internet that I had an abortion. Not only did I have an abortion, I tried to have that same abortion multiple times.

That is a very simplified explanation of what it was and what I chose to do about it.  Thanks to the courage of 33 public figures, I know I am not the only one. #HonestAbortion, #ShoutYourAbortion, #YouKnowMe

It shouldn’t matter that my life was at risk.  I shouldn’t need an exception to make decisions about my own body. Sure, it might be mortal sin. But so is sex before marriage according to my devoutly Catholic grandmother. The Orthodox rabbi in my family might also view eating a bacon cheeseburger as pretty unforgivable. The point is I’ve done both, so we are never really going to know if that was what would have kept me from The Good Place before I decided to abort my son at 20 weeks after spending the previous 12 trying to kill him.

What made me afraid to share my story openly was that I couldn’t predict how people would react. The internet is often a hateful place and I did not want to step into the spotlight on the world’s hate stage.

The truth is that I will never be able to control the way people react to my story. If I fundamentally can’t control other people’s reactions to something I’ve already done, then I shouldn’t let what they think stand in the way of me talking about it.

I hope that if this story has found you and you are motivated to respond to it, that you can chose to be human/e when you do. More importantly, if you are really passionate about your religious beliefs, I’m very happy for you. But please, don’t take what you believe and try to use it to control me. I think the best strategy to *Make America Great Again* is to just follow the concept of doing onto others what you would want done to you. Yosemite?

In my professional life we have a process called “cause of error”. My cesarean scar ectopic pregnancy experience was clearly an error which led to what I would call at work, “a terrible customer experience”. When our customers have bad experiences we prioritize figuring out what happened so that we can prevent it from happening again to another future customer. So when I think about this concept, and I substitute “pregnant woman” for “customer”, I hope sharing this story can prevent this experience from happening to future pregnant women.

I also strongly believe there are two types of people in the world: problem callers and problem solvers. I try to be the latter and am a huge fan of bringing solutions when trying to accomplish this goal. Off the top of my head, there are two solutions that can be implemented immediately to address the gaps I experienced throughout my cesarean scar ectopic pregnancy:

#1: Producing relevant, medically accurate and digestible information about cesarean scar ectopic pregnancies.

This was important to me. That’s why I wrote ALL.THESE.WORDS. It is still very unclear how many women will experience one. My hope is that those who do have access to as much helpful information about what it is and what the options are, as possible.

#2: Changing the Methotrexate Multi-Dose Protocol

I recognize that my experience is unique. In fact, my doctor shared that she still has been unable to find any other cases like mine. She’s been working on publishing this case in a medical journal. I’m looking forward to reading it and I hope that it can help many other people avoid this same experience. More importantly, I’d like to see the medical community change the protocol to require an ultrasound once a patient moves into Phase Two: Recovery. Adding this step to the process would provide evidence that the Methotrexate multi-dose protocol was successful. It would also offer a mechanism for early detection if it was not.

I also believe that this experience can make a broader impact on the world.

These are my wish list items:

#1: Reach the undecided voter.

Reach at least one other undedecided [or Trump supporter] and draw their attention to what is at risk if we do not take action against the growing threat to women’s reproductive rights in this country. Even better, if I can influence someone who is pro-life to reconsider not just their vote but their position on abortion completely. I couldn’t think of a better way to honor Noah’s warrior spirit in this election. Regardless, my ask is that you reach out to someone in your life that falls into one of these categories [undecided, pro-life or Trump supporter] to either share this message or your own. Whatever you think will be the information they need to change their mind and vote for Joe Biden. #BidenHarris2020

#2: Name Change.

Not only is “cesarean scar ectopic pregnancy” a mouthful, having “ectopic” in the title is confusing to non-medical professionals [and some medical professionals]. It was for this reason everytime I spoke about it while telling this story, I used its full name. An acronym did not feel appropriate. I also don’t think the name in its entirety or an ancronym would fully capture how horrible the diagnosis is, or how impossible it feels to choose one of the available options. It is for these reasons I think the name should be changed. I vote “Noah’s Syndrome”.

To summarize — the next presidential election is scheduled to end in four days. Regardless of the outcome, it is clear that we are at the beginning of an incredibly important war to defend the constitutional right to be in control of one’s own medical decisions. If you are as passionate about defending this constitutionally protected right as I have become — consider donating your time, talent or money to any of these organizations:

You could also consider becoming an abortion-clinic escort. Click here to learn more.

 

 

Phew. That was a lot. If you are still with me, thanks for making it to the end.

Stay well. Stay safe. Please vote.

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10 Comments

  1. Mara Saulitis

    Dear Elisha, Thank you for sharing your story with me, both in person at our visits and through this incredible essay in four acts. Your words brought me to tears many times, tears for you, your husband, your family including Noah, for our country, for women who will have the resources to navigate these painful waters and for those who won’t. The medical system is often not kind, nor compassionate, nor understandable, nor geared towards caring for the whole person/family. Yet within your story I’m relieved there were touchstones in the medical world who leaned in, touched your heart and guided you through. I hope I was one of those as well. I’m sorry for the pain you suffered and I thank you for your words and the activism you inspire. So needed in these crazy times.

    Reply
  2. KO

    Elisha – how incredibly strong you are to weather that time in your life, and to put pen to paper and share your story. It is because of strong people like you, others can learn and more fully understand your experience. Sending you lots of love and respect. Thank you for sharing, you are a role model of resilience. <3

    Reply
  3. MJ

    Thank you so much for sharing your story, and all of this information that I sincerely hope other people in similar situations. This is incredibly brave and thoughtful.

    You’re right – there’s so little information about this out there. I learned so much, and if it’s alright with you, if I know someone who is facing such a heartbreaking situation, I would like to share this article with them so they know what they might expect.

    Reply
  4. Bridget

    Elisha, Wow! What an incredible post. I am so sorry you went through this. Thank you for sharing your emotional journey and opening your self up to others. I know many people who can relate to your post. Such a lovely way to honor Noah. You had me in tears. Thank you for spreading awareness of Noah’s Syndrome.

    Reply
  5. Amy

    Elisha,
    I read every last word and am thankful you have courageously shared your very personal journey. Honest sharing paves the way for others to open up, share and connect with one another. I admire your truth and strength!
    Xo

    Reply
  6. Aly

    Elisha,

    I am so sorry you had to go through something like this. I’m inspired and empowered by your story – I know it’s an important part of the healing process to tell it. Anti-abortion laws (amongst many, many other things) are an output of male oppression of women and making our voices heard is our best course of action. Almost 1 year ago I walked out of mass in Seattle and haven’t returned after the priest used shame as a teaching mechanism. I’ve never been as proud of that as I am today after reading your blog. I will spread the word on Noah’s Syndrome.

    P.S. Jay’s comment above made me tear up – how luck you are.

    Reply
  7. Arielle

    Elisha- you are so courageous for sharing your story in such a unique time of our lives. Your ability to story-tell such a heart wrenching experience is truly remarkable. I know your story will make history and Noah will always be remembered and honored.
    Thank you sharing xoxo

    Reply
  8. Jason Ross

    Elisha

    I applaud your courage in coming forward with this story, because it has been such a long, mostly private emotional journey. It is also strewn with political landmines, which you’ve been (understandably) wanting to avoid. But your truth is so necessary at this time.

    You and I experienced some of these tragic moments together. There are certainly some shared memories that bind us together in our sorrow, and longing for Noah to be with us today. Yet, I have still struggled to understand your innermost feelings. Your story, so well written, helped me walk a mile in your shoes. I would suspect you understand yourself a little better, too.

    I am so proud to call you my life partner. You are a shining star that continues to burn brighter. I stand behind you always, as your biggest supporter to the end.

    Your Husband,

    -Jay

    Reply
  9. Jessica

    Such a raw and powerful retelling. Thank you for sharing this story and your healing journey. What a beautiful way to honor Noah. So much love for you, elisha.

    Reply
    • Dolores Herzog , Mom

      Elisha, my Beautiful Princess.
      I am so proud of how courageously, you faced your life!
      I cried, all over again with your pain. Thank you for sharing and exposing yourself to HELP OTHERS. You are a LIGHT for many who thought they didn’t have any choices or HOPE to those who had to face the difficult ones. They can know they are NOT alone.
      I’M SO PROUD of you. You’re one Class Act! Thank you for being my daughter. I will always love you. Mom

      Reply

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