Preeclampsia and HELLP syndrome
Today we are pleased to have a guest post from Beth Frazer, a preeclampsia and HELLP syndrome survivor, and a volunteer with the Preeclampsia Foundation.
I remember the first time I heard the word “preeclampsia:” it was November 10, 2008, and I was blissfully pregnant with twins. Although this was my first pregnancy, I am a practicing attorney with a propensity to research and so considered myself to be an “educated” patient. I believed that everything was progressing perfectly. I thought that my headaches, blurred vision, shortness of breath, sudden weight gain, and swelling were all a normal part of pregnancy. In actuality, however, these were all signs that my kidneys and liver were shutting down, my red blood cells were destroying themselves, and my brain was swelling.
Fortunately, I was scheduled to have a routine OB appointment that day, at which time a urine test revealed that I was spilling protein. Several hours later I was diagnosed with HELLP Syndrome, a severe variant of preeclampsia, and was told that I was dying. Two days later our beautiful twins were born, 20 weeks premature and too small to survive. My doctor said that, had my OB appointment been scheduled even 48 hours later I would have suffered a massive seizure or hemorrhage. I had no idea that my symptoms were actually serious warning signs.
I now know that preeclampsia, often described as a hypertensive disorder of pregnancy or by the old fashioned term “toxemia,” is a known cause of premature births in the U.S. and is a leading cause of maternal and neonatal death. It is the reason that a pregnant woman’s urine and blood pressure are tested at every OB appointment. But I never heard of it before. I was left physically weak, heartbroken, and completely confused.
I set out to learn everything I could about what had happened to me, and figure out whether it would happen again. In doing so I found the Preeclampsia Foundation, and I realized that I wasn’t alone. I found tens of thousands of women have suffered situations similar to mine, most of whom had also been unaware of preeclampsia before their own diagnosis.
I learned that preeclampsia has no known cause, and has no known cure other than immediate delivery of the baby. If it is diagnosed early enough, however, preeclampsia can often be managed, allowing the pregnancy to progress a bit further and result in better outcomes for both mother and baby. I studied the signs and symptoms of preeclampsia. I analyzed the different ways it presents itself, from the classic case of a pregnant woman whose blood pressure creeps up during her third trimester, to more unusual cases like my own. I researched the latest tests and theories and medical developments.
And, finally, my husband and I met with our Maternal Fetal Medicine specialist (“MFM”), a high-risk OB, to discuss our future. We discussed the risk factors for preeclampsia, which include a history of preeclampsia, particularly preeclampsia before the third trimester. I underwent testing and learned that I might have blood-clotting disorders, which might also put me at risk for preeclampsia. Nonetheless, my MFM felt that awareness and treatment of these risk factors would allow us to successfully manage a future pregnancy.
Armed with the blessing of my MFM and knowledge of preeclampsia’s signs and symptoms, I became pregnant again. Those first few months were terrifying and anxiety-ridden. My MFM monitored my blood pressure, blood work, and urine protein levels constantly, as well as the development of my baby– first every other week, then every week, then twice a week. Being informed empowered me, and I was reassured knowing that I recognized those symptoms that needed to be reported and acted upon.
We all held our breath as slowly but surely milestones were met. First, 20 weeks, when I previously developed preeclampsia, then 24 weeks: viability. Then 28 weeks. Then 30 weeks and 32 weeks, then 34. . .
And, urprisingly, preeclampsia never developed! I sit here now with a beautiful baby boy snuggled up on my lap. Born full term and healthy, he is a true testament to the power of preeclampsia education and awareness.
It is possible to have a healthy mother and baby after a preeclampsia diagnosis, or even after a preeclamptic pregnancy! The key is to not only receive regular prenatal care, but also be your own advocate. Know the signs, know the symptoms, know your body, and trust yourself.
Tags: HELLP syndrome, high blood pressure, hypertensive disorder of pregnancy, maternal fetal medicine specialist, preeclampsia, Pregnancy, prenatal care, prenatal tests, protein in urine, toxemia, urine test