The Preeclampsia Foundation was founded in 2000 as the only national organization dedicated solely to improving the outcomes of hypertensive disorders of pregnancy by educating, supporting, and engaging the community, improving healthcare practices, and finding a cure. From the beginning, we were a product of the internet age: the 5-8% of expectant women who developed preeclampsia, HELLP syndrome, and other hypertensive disorders of pregnancy could come together, get education and support, and share their experiences regardless of where they were located geographically.

Since those first years of bringing patients and their families, we’ve grown to bring the larger community of patients, families, healthcare providers, researchers, industry, and other stakeholders together to make huge changes in the way that we look at maternal mortality and morbidity in the US and worldwide. More recognition is being paid to the impact that patient voices can have on improving healthcare practices and moving research forward – and we’re so proud that our community continues to be right at the heart of it all!

Pregnancy is a confusing time. A pregnant patient’s body is going through a lot of changes, so it can be hard for her to know what’s normal and what’s a red flag. Learning more about the signs and symptoms of preeclampsia, HELLP syndrome and other hypertensive disorders of pregnancy can help a woman to speak to her provider, identify a problem early, and ensure the best possible outcome for her and her baby. 

Although we hear it less these days than in the early years of our organization, we still get patients who come to us and say that they had no idea that their intense headache or their extremely swollen hands were signs that something was going wrong in their pregnancy until they went into crisis.  It’s our goal to help all pregnant women know what they should watch for and what they should report to their care providers so that expectant management happens early before preeclampsia becomes a threat to the life of a mother or her baby.

We also make sure patients understand the difference between signs of preeclampsia and symptoms. Signs are characteristics of a disease progression that can be measured but may not be apparent to the patient, such as high blood pressure or protein in the urine. A symptom is something a patient can experience and recognize, such as a headache or loss of vision. Attending all of your prenatal visits with blood pressure checks and symptoms reporting is vital.

The Preeclampsia Foundation’s mission falls under three “pillars”: Community, Healthcare Practices, and Research. 

Our approach starts with patients: our goal is to improve the lives of our affected community by engaging our patients and their families through education, engagement, and support while providing them a lifetime home where they can make a difference for the future for others like them. However, we also recognize that at the last survey (2015), less than half of all well-educated expectant and new moms knew all of the signs and symptoms of preeclampsia. Signs and symptoms education remain critical to ensuring women receive a timely diagnosis and management.

But a patient is only half of the patient-provider equation. Research data shows that the best outcomes for mom and baby occur when healthcare providers are well-versed in the best practice guidelines for the diagnosis and treatment of preeclampsia. Data from the California Maternal Quality Care Collaborative (CMQCC) found that over 60% of maternal deaths due to preeclampsia in the state were likely preventable if the patient had been diagnosed in a timely manner and had her blood pressure properly treated. 

And finally, at the end of the day, research into better prediction, prevention, diagnosis, and treatment for pregnant women with preeclampsia is the only true way that we are going to move the bar from where it’s been for over 60 years. Telling a woman that she must deliver her baby as early as 20 weeks to save her life simply cannot continue to be an acceptable “treatment” protocol in the 21st century. Finding a cure for preeclampsia goes beyond funding individual research studies: it involves advocating at a systematic level for the prioritization of maternal health as a national (and international) issue that can and should be addressed. Quality improvement research shows that there is room for advancements in all levels of the maternal health experience: education, diagnosis, management, treatment, and prevention. One way that patients and researchers can get involved is through the Preeclampsia Registry: www.preeclampsiaregistry.org 

The Preeclampsia Foundation has always lived in a very virtual space when it comes to engaging with our community and other stakeholders, so for us, pivoting to the digital space with the onset of COVID-19 social distancing was not as drastic as it might have been for other organizations. Our events saw the most drastic impact, including our largest awareness and fundraising event the Promise Walk for Preeclampsia, which typically happened in about 30 communities each year across the US. Our volunteer community worked tirelessly for the 2020 and 2021 seasons to help their local Promise Walk communities feel connected and supported with virtual events, but there’s no denying that there’s nothing that compares to coming together to “make strides” against preeclampsia in person with other families like yours.

COVID-19 also significantly impacted the prenatal healthcare field, as many obstetricians moved prenatal appointments to telehealth and were forced to limit in-person support resources. That created a very real physical and mental impact on patients with preeclampsia. We moved up the launch of our Cuff Kit program last year, which provides home blood pressure monitors and educational resources to expectant and new moms in need. The response has been overwhelmingly successful – but what’s more inspiring is that it’s encouraging young women to think about their heart health beyond pregnancy as well. 

More alarmingly, the data regarding pregnancy outcomes in women who develop COVID-19 during pregnancy shows that pregnant individuals with COVID-19 had an almost two-fold higher risk of preeclampsia, as well as other adverse outcomes including maternal mortality, severe infection, and preterm birth compared to pregnant individuals without COVID-19. The Preeclampsia Foundation has a COVID web page we keep updated with the latest guidance specific to help patients understand what we know about the intersection of COVID-19, pregnancy, and hypertension in pregnancy.

Preeclampsia affects 5-8% of all births in the US and can affect any woman during any pregnancy or the postpartum period. It’s vital that ALL expectant and new moms are aware of the signs and symptoms of preeclampsia and aware that high blood pressure during pregnancy can be life-threatening if not properly diagnosed and treated. By spreading education, the medical community can help patients to feel empowered to speak up when something feels wrong. Our vision is a world where preeclampsia no longer threatens the lives of mothers and their babies – and the medical community of the MNPQC is a vital part of making that a reality!

I often joke that I’m the person you don’t want talking shop at your baby shower! 

I started working for the Preeclampsia Foundation back in 2009 as a recent college grad to help the team address the growing international patient population reaching out from low and middle-income countries (my educational background is in international relations with a specialty in women’s health issues). From the beginning, I was deeply impressed with the passion that the Foundation’s volunteers, most of whom were preeclampsia survivors themselves, had for giving back to others like them, while also ensuring that the education and support we provided had the highest scientific credibility. Women supporting other women create a powerful force for change – and it’s still at the heart of everything we do!

Then, in early 2014, I experienced my own maternal health crisis – an ectopic pregnancy that threatened my life and resulted in a long, arduous infertility journey. In what could only be described as an ironic case of taking work home with me, at the end of that journey, I delivered my rainbow baby daughter Adelaide about 3.5 weeks early in November of 2019 because of rapidly worsening gestational hypertension. Her induction could have been an unexpected and frightening health crisis but was instead a case of “where everything goes right” because my obstetrician, nursing team, and hospital labor & delivery staff had been properly trained on how to manage early-term preeclampsia. I got to have the most beautiful, joyous birthing experience because of their diligence and training – and I want that same experience for other moms like me.

The Preeclampsia Foundation does a ton of work with hospitals and state-level perinatal quality collaboratives, so a great place to start is to reach out to us directly via email at info@preeclampsia.org. In addition, we encourage everyone to check out the “Get Involved” section of our website to sign up as a volunteer, and to subscribe to our newsletter at www.preeclampsia.org.

Finally, follow all the Preeclampsia Foundation’s social media channels (Facebook, Instagram, Twitter, YouTube, LinkedIn) to keep up-to-date on the information we share.