Fifteen years ago, Ellen was induced into labor with her first son after she suffered from headaches and other symptoms that pointed to preeclampsia and HELLP syndrome.
Her subsequent two pregnancies resulted in the same outcome – inductions, each one a bit earlier than the previous, due to preeclampsia and HELLP, a life-threatening pregnancy complication considered to be a variant of preeclampsia.
Name: Ellen and Jessica
Children: Three and Two
Years later, Ellen’s experience with preeclampsia provided valuable wisdom for her younger sister Jessica. Both residents of the Salt Lake City area, Ellen and Jessica took the lessons learned from pregnancy complications for one sister into preventive measures for the other. The experiences and stories of those who have gone through serious pregnancy complications can inform not only clinicians and researchers, but expectant mothers themselves.
“The more we talk about these things, the more women realize, ‘Other moms have gone through this and they’ve come out on the other side, and I’m going to come out on the other side too,’ ” Ellen says. “I’m sure that was a lot of the comfort that Jessica had. She saw that I was OK, my babies were OK, and she would be, too.”
Developing preeclampsia and HELLP syndrome weren’t the only difficult parts of Ellen’s pregnancy with her first son. She also experienced a lot of anxiety due to previous miscarriages.
“It was hard to know when I was overreacting because I had so much anxiety,” Ellen says. “It kept me up a lot at night. I look back at my first pregnancy and it was not enjoyable because the anxiety of losing my pregnancy at any minute was so severe. The people around me, including my mom and my sister, were just trying to keep me calm.”
A good relationship with her doctor and strong instincts clued her into the need to say something when she started experiencing preeclampsia symptoms late in her pregnancy.
“I started to notice a pretty consistent headache and my blood pressure was getting a little bit high,” Ellen says. “They told me if I had a headache that a couple of Tylenol would not take care of, I needed to tell them. And I got to that point. I remember a very distinct feeling like, ‘This isn't right.’ There wasn't a question in my mind that maybe I was just being paranoid or overreacting.”
In addition to persistent headaches, other symptoms of preeclampsia include sudden weight gain or swelling (especially in the hands, feet, or face), vision changes (seeing spots, blurry vision), pain in the upper abdomen, and shortness of breath.
According to the Preeclampsia Foundation, the rate of preeclampsia in the United States has increased 25 percent in the last two decades and is a leading cause of maternal and infant illness and death. Preeclampsia affects one in 12 pregnant women and can lead to serious complications for both mother and baby. It often strikes without warning. The condition can result in a preterm birth, NICU stay, or a prolonged hospital stay with potential lifelong impacts for mother and baby.
Dr. Alison Cowan, head of medical affairs for Mirvie, says a strong relationship between clinicians and expectant mothers is critical for navigating the complexities of pregnancy complications like preeclampsia. “It’s imperative to talk to your doctor or midwife about preeclampsia,” Cowan says. “Depending on your situation, they might have recommendations for you to reduce your risk, like exercise or taking a daily baby aspirin.”
Although all of Ellen’s pregnancies ended similarly with preeclampsia and early deliveries, all three of her children were born healthy with no need for neonatal ICU care. Ellen’s experiences later shaped her sister Jessica’s mindset when she got pregnant.
“I am definitely the type of patient that usually has a list of questions,” says Jessica, a paralegal and mother of two. “I wanted to know if my sister having preeclampsia increased my risk of developing it. My doctor explained that there isn't necessarily a genetic component, but she encouraged me to get a home blood pressure cuff just to keep an eye on things.”
Jessica chose a $20 blood pressure cuff that connected to her phone, keeping a log of her blood pressure over time. Jessica started out taking her blood pressure a couple of times a week. That increased to daily measurements toward the end of her pregnancy. Ultimately, the decision to track it proved to be invaluable.
“As I entered my third trimester, I started noticing that my blood pressure was still within the normal range, but was starting to kind of trend upwards, and I was able to bring that up with my provider,” Jessica says.
Jessica never had any headaches or other symptoms – the rising blood pressure was the only indicator of preeclampsia. By 37 weeks, blood pressure and laboratory tests indicated it was time for an induction. Her son was also born healthy with no need for NICU care.
During her second pregnancy, Jessica was prescribed baby aspirin, a common preventive measure for preeclampsia. Subsequently, she didn’t develop the condition again, and her daughter was born without the need for an induction.
Looking back, Jessica says being prepared for the unexpected was one of the most important things she learned from the experiences of her sister and other family members and friends who’d had pregnancy complications.
“As you're approaching pregnancy and motherhood, gather the information and do what you can, but be ready to take some curve balls,” Jessica says. “Don't be afraid to advocate for yourself and to ask the questions and to really get the answers.”
Prediction and prevention
The story of Ellen and Jessica illustrates what Mirvie wants to accomplish with its landmark study of 10,000 participants from across the country. Using a simple blood test, the study seeks to identify who’s most at risk for developing pregnancy complications like preeclampsia to predict them and prevent them from happening.
Jessica says a simple blood test like the one Mirvie has developed and is testing would offer even more reassurance for expectant mothers.
“During pregnancy, your body kind of takes over and you can feel really out of control,” she says. “So to know your risk and say, okay, this is something that I can keep an eye on, that I can talk with my doctor about, and I can feel some semblance of control.’ Even if you're not at risk, I could say I checked, I can let that go.”
While Ellen and Jessica had positive outcomes, others have experienced devastating consequences from preeclampsia and other pregnancy complications. U.S. maternal mortality rates have increased by 40%, yet 80% of pregnancy-related deaths are preventable. This highlights how much more needs to be done to make pregnancy and childbirth a dignified and safe experience for all. Part of that dignity comes from offering a more proactive approach to pregnancy complications.
Ellen wishes she’d been better prepared for the possibility of developing preeclampsia.
“I had no idea what my risks were and I didn’t know how common it was,” she says. “Knowledge is power. I think the more time you have to prepare yourself, the better. Especially for a new mom who's new to it all and you don't know what to prepare yourself for.”