Here’s a warning up-top: This may be my most boring blog to date. There are a lot of numbers and statistics. That said, it is also possibly my most important blog I’ve ever written. While I’ve never been fully transparent about what happened to me last year during my pregnancy, today seemed like the right time to share since May is Preeclampsia Awareness Month, and May 22 is World Preeclampsia Day.

You will read that my story was incredibly rare. That said, preeclampsia is still one of the leading causes of maternal death in the United States.

American women are more than three times as likely as Canadian women to die in the maternal period, and six times as likely to die as Scandinavians. In every other wealthy country, and many less affluent ones, maternal mortality rates have been falling; But in the U.S., maternal deaths increased from 2000 to 2014. The rate of preeclampsia in the U.S. has increased by 25% in the last two decades and is a leading cause of maternal and infant illness and death. Preeclampsia is responsible for over 70,000 maternal deaths and 500,000 fetal deaths worldwide. Up to 24% of pregnant women with HELLP syndrome and up to 34% of babies die from the condition.

There are a lot of statistics, and in my case, I came down on the wrong side of basically every one, with one important exception: I’m still alive and I could very easily not be.

This blog was a tricky one to write, because my idea of “the danger zone” is very different from other moms. Therefore, even though I know this is my personal blog where I am sharing my personal opinions, I want to start with the disclaimer that, as always, people may feel very differently than I do.

The danger zone in pregnancy is historically prior to 12 or thirteen weeks, or prior to the second trimester. Most people think of the weeks after that as the safe zone for one very specific reason: 80% of miscarriages occur before the 12^th week of pregnancy. As someone who has been on the shit end of a statistic before (more on that later), when I see that 80% number, all I see is “1 out of 5 miscarriages happen after that time.” But most (non-traumatized) people don’t think that way. This is why most people announce their pregnancy after 12 weeks. The actual miscarriage danger zone is far more nuanced than that, of course. The rate does not DROP after 12 weeks, it slowly decreases over time, and once you have a confirmed strong heartbeat, a confirmed uterine pregnancy, and a confirmed growth rate, all of these numbers decrease. This can happen far before 12 weeks, even as early as 6 weeks. But in general, people feel “safe” after 12 weeks.

Now that I’m in the loss community, however, I know innumerable ways for babies to die at all different stages. For me, I think about genetic abnormalities such as trisomies, things you might be able to detect in a non-invasive prenatal testing (NIPT) blood draw at 9 weeks. I think about neural tube or abdominal wall holes or placental leaks, which may be detected by an alpha fetoprotein (AFP) blood test at 15-20 weeks. I think about anencephalies, which may be detected in a 12- or 20-week anatomy scan. And of course, I think about everything that could go wrong after, up until full-term stillbirth, SIDS, school shootings, you name it, I’ve thought about it.

Some of those dangers will literally never go away. There is no “safe zone.”

That said, I have learned from my experience, and from my peers in the loss space, that a person’s individual trauma tends to inform their anxiety and their own fears.

For example, I know a lot of women who experienced early miscarriages by discovering bleeding, so then in a next pregnancy, they fear going to the bathroom because they think they’ll find blood. For me, in this second pregnancy I am always elated to go to the bathroom, because of my whole organ-shifting snafu in my previous pregnancy.

For some women who found out their babies had no heartbeat from a scan in their first pregnancy, they are terrified of ultrasounds in a next pregnancy.

For me, my personal “danger zone” is 20 weeks and up, which is exactly what I am right now, to the day. The rate of miscarriage once you get to 20 weeks is less than .5%, but for me, I feel as if I’m entering the danger zone. The reason for that is, except in EXTREMELY rare cases, the risk of pre-eclampsia begins at 20 weeks.

I’ve never gone into the particulars of my story on my blog before, but the reason my pregnancy ended last year was due to an extremely severe form of pre-eclampsia (“pre-e”), known as HELLP Syndrome. HELLP is an acronym that stands for hemolysis (H) elevated liver enzymes (EL) and low platelets (LP). The severity of HELLP is divided into three classes, and I had the worst kind. Serious illness and death can occur in about 25% of HELLP cases, and most of those deaths occur in the top class, the one I had. That percentage is only the first of many in this post, so strap in.

As I mentioned before, I’ve gotten the shit end of the stick in a LOT of statistics. Let’s do some math, and start at the top. Among pregnant women, 5 to 8% develop pre-e but in the United States, it’s more like 3 to 4% of pregnancies. That means 96-97% of women in the US do not develop pre-e. Unfortunately, I was in the 3-4%.

Of the 3-4% of pre-e cases, 15% of those cases develop HELLP syndrome, 85% do not.  Therefore, I was 15% of the 3-4%. Also, of the 3-4%, 90% of pre-e cases occur after 34 weeks of gestation. Therefore, I was in the 10% of the 3-4%, and then 15% of that.

Let’s do the math another way: HELLP syndrome happens in about 1 to 2 of 1,000 pregnancies, or .1 to 0.2% of all pregnancies depending on the study. HELLP syndrome is typically a third-trimester condition, with most (68%-70%) cases occurring between 27 and 37 weeks of gestation.

For me, I was at 24 weeks when I started showing signs. I haven’t done the exact math, but basically, I was in the 30% of .5% of pregnancies. And the percentage is actually even smaller than that, if you consider the fact that my case was so severe.

Most doctors agree that test results are not alarming until they are “twice the upper limit of normal.” When I checked into the hospital, my liver enzymes were five times the upper limit. By the time they said it was “not safe for me to be pregnant anymore,” which was two days later, my enzymes were 11 times the upper limit. This all happened within 48 hours.

If you’re an optimist, and you’re a believer in “lightning doesn’t strike twice,” then you may be thinking that I am worried about nothing. The statistics are SO small, it couldn’t possibly happen to me again, right? WRONG. Here’s the problem: once you have it once, you’re far more likely to have it again.

More stats… here we go:

Research suggests that for women who had HELLP, the rate of recurrence ranges between 5-19% with higher rates if HELLP developed in the second trimester aka me. Now again, if I hadn’t already been 1 in 100,000,000 or something like that, I’d be calmed by that fact that at WORST, 81% of people do not get it again. But in my traumatized brain, all I see is, “1 in 5 chance this happens again.” When I mentioned in a previous blog about the bravery of pregnancy after loss, this is exactly the statistic I was thinking about.

If you’ve gotten through the numbers, thanks for sticking around. For most people this is boring, and completely irrelevant. For me, I do these calculations literally every day in my mind. I think of the risk factors I have, the gestational age of my baby, his chances of survival, how quickly things may escalate, and the time it will take me to get from my apartment to the hospital. I do math in my head all day every day. No wonder I have trouble thinking or caring about anything else. I’m in a constant loop of risk assessment calculations.

Many experts would say that there is a lot of hope, and that in most cases, even if I get HELLP again, it’s likely to happen later, and less severely. But again, when I see “most cases,” I think, “I’m not most.” I wasn’t “most” last time, and I probably won’t be “most” this time.

As I consider how scared I am, even at 20 weeks, my feelings of jealousy continue to creep in. Just last week, I saw 3 pregnancy announcements on my social media feeds. You’d think I’d be happy, because I have a little bean growing too! But instead, I have begun a terrible habit of zooming alllll the way into the ultrasound photos. I know exactly what I’m looking for, after all, I’ve had many of my own photos on my fridge, 6 with Maliyah, and 7 so far with baby 2.

I look for two very specific things in the social media posts on the scan photos: the gestational age in the ultrasound, and the date. Then I calculate how long they waited to post. The only reason I do this is jealousy. I wish I had the confidence to tell people at 13 weeks. I wish I saw my 12-week scan and thought, “I’m going to bring home a living baby and I’m going to tell everyone!” But I am 7 ultrasounds in, and I still don’t believe that.

If anything, as I enter “the danger zone” today, I think less and less that it will happen. All of a sudden, I am watching my own body like a hawk.

Yesterday, I walked 15,000 steps. I came home and I put up my feet to watch tv and I inspected my legs like a scientist. Were there signs of swelling?

If I feel a possible headache coming on (which I’m prone to outside of pregnancy), I wonder if my brain is swelling.

Every night when it’s almost midnight, I play the constant game of, “am I seeing spots, or do I just need to take out my contacts?”

I leaned down to pick up a pen from the floor today, felt a slight twinge in my side, and wondered if that would be considered “upper right quadrant pain.”

All those bolded words are signs of HELLP. They are signs I knew nothing about last year, and to be honest, I didn’t have any of those symptoms, anyway. But now I know, and now I am VIGILANT. I have never known my body more than I know it now.

You may think that makes me feel safer, and that I will now know when there are signs of things going south, but my previous pregnancy took that from me as well. Last year, when I checked into the hospital, even the specialists were floored by the incongruity of my lab work (BAD), and my physical symptoms (NONE). If the doctors couldn’t believe it, how am I supposed to trust my own body? The doubts and fears I have are creeping in with a vengeance, and I am only on day 1 in the danger zone.

Every morning when I wake up, and every night when I go to sleep, I remind myself of what I can control (taking my meds and trying my hardest to keep my stress down) and what I can’t (everything else). I have no words of wisdom. I have no sage advice. All I have is the fact that I will wake up again tomorrow, and try to get through that day, just like I got through this one. One day at a time, day after day. I have a feeling this herculean task will become more and more difficult as the weeks wear on, as we approach the date I carried Maliyah until, and then after, as well. The danger zone is forever, so I am arming myself for battle.

(Written at: 20 weeks 0 days)

Some Sources:

• https://www.preeclampsia.org/hellp-syndrome
• https://my.clevelandclinic.org/health/diseases/21637-hellp-syndrome
• https://www.yalemedicine.org/conditions/hellp-syndrome
• https://www.npr.org/2017/05/12/527806002/focus-on-infants-during-childbirth-leaves-u-s-moms-in-danger