It’s so much more than high blood pressure; What I wish I’d known about Preeclampsia before it killed my child

When I was pregnant with Adrian, I remember reading about preeclampsia in my prenatal education books and also here and there in articles online. I knew many of the symptoms and warning signs, and I thought I was pretty prepared if any of them became relevant during my pregnancy. It turns out there was quite a bit I didn’t know.

In honor of Preeclampsia Awareness Month, I am sharing some things I wish I had been more aware of before preeclampsia resulted in the death of my son.

Note: Factual information in this article is referenced and derived from both the Preeclampsia Foundation website, and also the ACOG Bulletin, “Gestational Hypertension and Preeclampsia,” dated June 2020. The bulletin is unfortunately behind a paywall (I paid for it), but may be available through academic journal access.

What is Preeclampsia?

From the Preeclampsia Foundation:

In more plain terms, preeclampsia is a disease characterized by high blood pressure that can affect internal organs in diverse ways. Preeclampsia also has the potential to result in the death of the mother or child.

I had some of the Risk Factors for developing Preeclampsia

Preeclampsia affects 2-8% of all pregnancies (Reference: ACOG Bulletin).

While it can happen to anyone, certain risk factors make it more likely. I actually had a few of these risk factors during my pregnancy:

While my personal history didn’t make me high risk, per se, I think it’s important to be aware of one’s risk factors regardless.

Having experienced preeclampsia twice now**, I am much more aware today.

** I experienced preeclampsia during my pregnancy with Adrian, and I was in the beginning stages of both preeclampsia and HELLP during my pregnancy with his living sister. My provider delivered her quickly enough that I may or not qualify as formally having had preeclampsia a second time.

“High” blood pressure is debatable, and possibly relative—

The primary symptom of preeclampsia is high blood pressure, but what does that mean?

Diagnostically, high blood pressure in pregnancy means measurements reaching at least 140 systolic (top number) OR 90 diastolic (bottom number) on 2 separate occasions taken more than 4 hours apart, anytime after the 20th week of pregnancy. (Reference: ACOG Bulletin)

This is the primary definition and requirement used by prenatal providers, and because of this, my providers were never worried about my steadily rising blood pressure, which only barely reached these levels towards the end of my pregnancy. However, there is some debate amongst medical professionals on whether or not a significant rise in blood pressure over a pre-pregnancy normal is worth considering. This was the case for me.

My pre-pregnancy (and post-pregnancy) blood pressure averages around 105/65, so levels that would be seen as normal for someone else’s pregnancy should have been seen as worrisome for me. While the Preeclampsia Foundation acknowledges the importance of considering a rise in blood pressure over the pre-pregnancy norm, this is unfortunately still under debate. In my case, it was not until after Adrian died that my Perinatologist diagnosed me with preeclampsia based on the cumulative information contained in my medical records, including my personal blood pressure history.

Besides blood pressure, there are additional tests that can help to diagnose preeclampsia and related conditions

Have you ever wondered why your prenatal provider tests your urine on every visit? It’s because other than blood pressure readings, urinalysis is one of the simplest tests that can indicate signs of preeclampsia. When providers ask for a urine sample, they are testing for the presence of protein that may have “spilled” from your kidneys into your urine. Sometimes, providers may also want to do a longer test where they ask you to collect urine in a jug for up to 24 hours to provide a more complete picture. (Reference: Preeclampsia Foundation)

In my case, my midwives tested my urine on every visit. They never provided the results of the testing, and so I always assumed everything was normal. (After checking my records, I know now that it was); however, I wish I had been more engaged with this testing at each visit. It would have been a simple conversation to ask my midwives what they were testing for, and if there were any signs or symptoms I should report to them. I did have several symptoms I will discuss further down that would have relevant to this conversation.

Another aspect I didn’t know until preparing this article is that dipstick urinalysis has high rates of both false positives and false negatives (Reference: ACOG Bulletin). Since my midwives’ office only used dipstick urinalysis with me, it is possible my results were false negatives.

Providers may also ask you to do blood testing, generally a complete blood count (CBC) and sometimes other testing. If a provider suspects a condition related to preeclampsia such as HELLP Syndrome (discussed lower down), having baseline bloodwork can be useful for comparison to later results. (Reference: Preeclampsia Foundation)

In my pregnancy with Adrian, my providers did initial bloodwork, but even though I reported several symptoms of preeclampsia later in my pregnancy, they did not run additional blood tests for preeclampsia. In consulting with my perinatologist later, she mentioned that my records indicated I may even have been developing HELLP Syndrome, and that it may have been useful to have run those additional tests. This is something else I wish I had known.

There are some additional types of tests under development and/or in limited use right now that may also help predict and/or diagnose preeclampsia. These tests weren’t available during my pregnancy with Adrian, but I look forward to seeing these developments continue in the future. Read more at the Preeclampsia Foundation website.

Proteinuria is no longer a required symptom for diagnosis (but some providers still emphasize it)

Although urinalysis is an easy way to identify potential preeclampsia, proteinuria (protein in the urine) is actually not a required piece of diagnostic criteria. This means that one can have preeclampsia without having protein in the urine. (Reference: ACOG Bulletin)

Although the decision to remove proteinuria as required criteria was made in 2013, some providers are still going by the older guidelines. This affected pregnancies like mine, where I was told I couldn’t have preeclampsia because I didn’t have proteinuria. If I had known proteinuria wasn’t required, I could have pushed harder or asked for more testing based on my other symptoms.

There are several symptoms besides high blood pressure and proteinuria that can potentially indicate the presence of preeclampsia

You may have seen this list of symptoms in your prenatal guidebook or on leaflets from your provider. I definitely saw this list multiple times, and even googled it towards the end of my pregnancy, when I started to develop additional symptoms.

The Preeclampsia Foundation goes into excellent detail about each of these symptoms and the specific aspects to look out for, so I won’t repeat their list here. I will say it’s worth noting that while some of these symptoms individually may be normal or common in pregnancy, when you aggregate them, it may be time to discuss with your provider.

During my pregnancy with Adrian, I reported all of the symptoms I have checked above, plus reduced fetal movement, to my providers. Knowing what I know today, my specific combination of symptoms should have made my providers concerned.

Preeclampsia has two nasty big brothers: Eclampsia and HELLP

The ACOG Bulletin describes eclampsia as the “convulsive manifestation of the hypertensive disorders of pregnancy,” basically meaning it is a disorder that results in maternal seizures. Additionally, despite the name, eclampsia may or may not be a progression from preeclampsia; the bulletin states that between 20-38% of cases of eclampsia are not preceded by either high blood pressure or proteinuria. In any case, eclampsia is a more serious disorder, and may result in maternal death or short or long-term cognitive impairments, amongst other impacts.

Note: I did not personally have eclampsia, but I thought it was worth mentioning as something to be aware of in the preeclampsia conversation.

Preeclampsia’s other nasty big brother is HELLP Syndrome. Hemolysis, elevated liver enzymes, and low platelet count (HELLP) syndrome is a more serious form of preeclampsia that occurs in 5-12% of preeclamptic pregnancies (Reference: Preeclampsia Foundation). HELLP Syndrome is both more deadly and can sometimes present in a way that makes it more difficult to diagnose (Reference: ACOG Bulletin).

After reading about one of the ways HELLP syndrome can present itself—lacking either hypertension or proteinuria, with the main symptoms being upper right quadrant pain and nausea—I realize more and more that my perinatologist may have been correct about me developing HELLP with Adrian. It’s too late now to make a definite diagnosis from the information in my records, but I do wish my providers had been paying more attention at the time.

Preeclampsia can cause serious problems for the mother and the fetus, up to and including death

Paraphrased from the ACOG Bulletin, some of the potential impacts of preeclampsia can include:

It’s hard, when looking at a list like this, to realize the full impact of what these items mean. I only experienced one of them for certain, and it completely changed my life. And I wonder, looking back at the symptoms that should have had my providers pushing me for an earlier delivery, how differently my life would be today if they had been paying more attention? Or even if I had pushed them harder to pay more attention.

I think one of the things we do a poor job discussing in prenatal care are the potential consequences of various potentialities in pregnancy. Preeclampsia is a well-known disease of pregnancy, but how many pregnant patients realize preeclampsia can be deadly, either to them or their child? I don’t think it really registered with me until it happened to my son. The placental abruption, uncaught by my providers, ended his life.

There are no known screening methods (yet) to identify who will develop preeclampsia, but there are some potential preventative measures

While efforts are ongoing to identity screening methods either in early or late pregnancy to determine who will or won’t develop preeclampsia, no known screening methods have as yet been proven effective. Research continues. (Reference: ACOG Bulletin)

On the preventative side, however, there has been potential progress. One of the biggest developments concerns prophylactic intake of low-dose aspirin starting in early pregnancy, particularly for those with specific risk factors. This is not a blanket recommendation, and should be discussed with one’s individual prenatal or preconception provider, but there is limited evidence that may prove promising. (Reference: ACOG Bulletin)

During my preconception planning for my second child, this was one of the aspects my provider discussed with me, and we decided together I would start on an aspirin regimen even prior to conception. Interestingly, despite my aspirin intake, I did start to develop both preeclampsia and HELLP around the 36-week with my second pregnancy; however, I had no outward symptoms. Could the aspirin have delayed the onset or severity of the preeclampsia my body seemed predisposed towards? I have no way on knowing. Regardless, I am happy to have taken it, and more than happy my provider identified the reoccurrence in time to safely deliver my daughter at 37 weeks.

Preeclampsia can effect you for the rest of your life

While the primary “cure” for preeclampsia itself is delivery of the fetus, one of the things that isn’t often discussed with preeclamptic patients is that this disease can effect you even after it’s gone—Something I only found out this year is that preeclampsia is linked with higher rates of cardiovascular disease, stroke, and arterial disease. (Reference: ACOG Bulletin)

Further, patients who have experienced preeclampsia are twice as likely to die from cardiovascular disease as those who have not experienced preeclampsia, and this risk is even higher in women with recurrent preeclampsia. (Reference: ACOG Bulletin)

—That’s me.

These are the things we need to be discussing with our patients. This is the kind of information we all have a right to know.

Risk factors, symptoms, diagnostic criteria, and potential impacts of one of the most common ailments in pregnancy is critical information. It’s information that could have prevented the death of my child. It’s information that prepares a preeclampsia survivor like me for potential impacts yet to come. It’s necessary information we all have a right to know.

Preeclampsia is so much more than high blood pressure.
Preeclampsia changed my entire life.

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