Anger is not an emotional state I typically find myself in. Not before my first pregnancy, not ever. This is not to say I never get mad, but I don’t usually sit in a space of anger. Recently, that has changed.
I noticed a drastic shift in my mindset toward anger in February 2024. The days were slowly moving forward toward Maliyah’s 1st birthday, and I could not stop myself from reliving my February 2023. Every day in February 2024, I found myself logging into the hospital app on my phone and obsessively rereading my old medical records. I read doctor’s notes, ultrasound tech annotations, and blood test results. I was back and forth, furiously switching apps between Epic and Google, searching every single medical definition. I went into my blood pressure app and looked at my readings day after day from the year prior. Truly masochistic behavior, day after day after day.
I got madder and madder.
We all know the saying, “knowledge is power.” Well, in my case? Knowledge was anger. Knowing what I know now, when I looked back at my charts from last year… I became increasingly angry every day.
I found my anger directed more inward than outward. I did not blame my doctors. I truly think they were doing the best they could with the knowledge they had. I have learned over the past year that doctors have specialties, and often, despite our common belief that doctors know everything, it’s truly a misconception. Doctors know their field. Doctors know how most cases resolve in their field, and how most bodies react to certain things, they know means and averages and medians. Unfortunately, as I said two weeks ago, I was an EXTREME outlier. I do not blame my doctors for not expecting I would be the .00001 case.
However, I found myself in February in an anger spiral, extremely angry at myself. The reason I was so mad, was because I know now that I had a lot of red flags. I had yellow flags, and they were flags I raised to my doctors. However, because the yellows don’t usually transform into reds, my concerns were dismissed. Now, knowing what I know, knowing the ending of my story, I am extremely livid with myself for not pushing harder. In my rational mind, I know this is not fair to me. I know that I did my best, and all I knew last year was to raise any concerns I had, and to trust my medical team’s expertise. But now that I know what I know, I find my blood boiling.
I mentioned a test last week called an AFP test. I am not going to get into the details here, but the short version of my story is, my test result was high. Not just high-ish, but HIGH. Now in 2024, I am an AFP expert. At the time, I was not. At the time, I raised my concerns, my doctor did a scan, said it was “unexplained,” and I threw up my hands. Now that I know what I know, I see my records and I say, “why didn’t I insist on seeing an MFM immediately?” I’ll tell you why… because I literally didn’t know what an MFM was last year.
I chastise myself now for not reading my charts during my first pregnancy. At the time, I was told specifically not to check the ultrasound reports or notes, because they said the baby’s sex, and we were keeping that a secret. My doctor told us that she would tell us verbally if anything was wrong. I really did not question this. I naively thought that medical notes were meant for a doctor’s own records. Yes, I knew I could access the notes on my app, but why would I? Wouldn’t my doctors say everything aloud to me that they put in there?
It turns out, that answer is no. There were many notes in my chart that were either inaccurate to the information they said aloud, or were just excluded from our 1:1 conversations. I know now, that notes are often not added to a patient’s chart until 3-4 days after the appointment. I know that, because nowadays, I refresh the app constantly after appointments, and I read the notes religiously and thoroughly.
What happens between the appointment time and the notes-entering time? I really can’t say. But I imagine that sometimes, a doctor looks over what they saw, observed, felt, heard, etc., and then later, they put those pieces of information together and write down some theories in the chart. Also, days later, when a doctor is seeing patient after patient, it’s very possible they told one patient something that they didn’t tell me, but 3 days later, how could they remember what they said to whom? Also, just like in any profession, doctors have specialized knowledge that they may inaccurately assume patients also know.
One glaring personal example is that no doctor ever mentioned pre-eclampsia to me after 12 weeks. At 12 weeks, my doctor told me to start taking one baby aspirin a day because it was proven to reduce the risk of pre-eclampsia, and I had two risk factors of pre-eclampsia: being 35 years old, and the fact that it was my first pregnancy. I started taking that one aspirin daily, as suggested, and nothing else was ever said. I didn’t ask what pre-e was, what to look for, how early it could begin… I didn’t ask anything. I just took the pill daily, and lived my life. And that word was never said again to me until I checked myself into the hospital.
Imagine my surprise when, in February of this year, I opened up an ultrasound report from 5 weeks before Maliyah was born, and found the note “close monitoring for preeclampsia.” I don’t know what “close monitoring” was meant to entail, but first of all, it was never said out loud, and second of all, I never saw a doctor in 3D between when that note was written, and until I was in triage with stroke-level blood pressure readings. But I didn’t know. So when I saw that note, I was mad. Very, very mad. Also included in that same notes section of the ultrasound was this: “We reviewed the association of an elevated AFP with adverse maternal and/or fetal outcomes including but not limited to stillbirth, fetal growth restriction and preeclampsia.” None of this was true. I mean, the actual risks are true, but they certainly did not “review” that with me. Nobody ever said the word “stillbirth” to us.
I felt so blindsided when I saw that note, that I asked my husband. I don’t remember being in a heightened state of anxiety such that I would have forgotten such a dire possibility being mentioned, but I was glad I had an additional witness. Sure enough, my husband confirmed, this was never stated to us.
Of course, hindsight is 20-20. I’d like to think that if I had seen that note, if they had said those words aloud to me, I would have asked more questions and I would have done more googling. I’d like to think that I would have advocated for myself more when, 3 days later, I had a video appointment with my doctor, I told her my blood pressure was rising, and she said, “that’s normal in pregnancy because your blood volume is increasing, it’s not high enough to medicate.” I didn’t know what that could mean back then, and I didn’t even know that I had already been flagged for pre-e. But now when I read those notes, and relive all of the events that followed, the what-if voices in my head are loud, and they are incessant.
Five weeks after that video call, as we were pleading with the doctors in the hospital for 1 more week, 5 more days, 3 more days, it’s impossible for me not to think, “WHAT IF I had just started on blood pressure meds a few weeks prior? What if I had actually been monitored closely and had even one routine blood draw?”
I’ll never have those answers, and it’s infuriating.
I had months of anger about my previous pregnancy, and what I should have done, if I somehow could have known. Then, I thought I was through my anger phase. Things continued to progress smoothly through pregnancy #2. I had a week where I had two very big appointments: first, an appointment with my MFM, then, an appointment for an anatomy scan, which is often the most detailed scan a pregnant person has throughout their entire pregnancy. I was extremely anxious (as usual), because I could have learned about many possible anomalies, or likelihood of preterm labor. I also could learn if my baby was growing on pace.
Everything went extremely well, and I was so incredibly happy that I screamed it from the rooftops! I announced baby #2 immediately on social media and excitedly told all my coworkers!
PSYCH!! I did none of those things.
I took the bus home from the hospital and cried. Then took a hot shower and cried. Then I laid in bed and cried. A lot. And I wasn’t even sad, I was MAD. Truly furious.
I couldn’t understand why everything was going so well. Of course I wanted it to go well, but why did one of my babies die, and this one was just… hunky-dory? I wanted to be so happy but I couldn’t get over my comparison and frustration.
I dug into my brain and went through everything that I was doing differently this second pregnancy. There were a lot of things. I had pre-conception consultations and tests. I’m taking some different meds. I’m taking two aspirin daily instead of one. I’m overseen by a team of doctors who are extremely knowledgeable.
On a good day, those things give me peace and solace. On a bad day, like I was having around 19 weeks, 5 days, it made me furious. Here’s why: the things I’m doing differently are so easy. SO EASY. They’re so easy, that I cannot possibly grasp why I didn’t do them last time. The most invasive thing I’m doing this pregnancy is giving myself one injection a day. Needles don’t bother me, and if I’m honest, I don’t mind the injections at all. It’s not like I had a massive surgery or reconstructed my uterus. I’m taking 1 additional aspirin a day! Those pills are so small I routinely drop them on the ground. The things I am doing are SIMPLE.
And yet, I wasn’t told to do them last time.
If I had done those things, would I have a living child at home? If I had, would our baby boy be able to meet his sister instead of just seeing her handprints? I just cannot make sense of the fact that I had to lose a baby when it seems so SIMPLE to have an uneventful pregnancy. Like I said before, the what-ifs are loud, and they are incessant. I absolutely hate when people in the loss community say “if you didn’t have baby 1, you wouldn’t have baby 2” because it’s just simply not true. We always wanted more than one baby. And I very easily could have had both alive. But I don’t, and I will never know why. It’s unfair, and it makes me angry.
I know anger is one of the classic stages of grief, and somehow, I hadn’t found myself there until recently, but here I am, and who knows when I’ll see myself on to a different stage. Everyone says, “grief is not linear,” and I’m here as a shining example, finding myself back in stage 2, after I made it through the other 4. If you need me, I’ll be at the nearest rage room.
(Written at: 20 week 4 days)