Today (May 22) is World Preeclampsia Awareness Day. Preeclampsia is a pregnancy complication characterized by high blood pressure and signs of damage to another organ system, most often the liver and kidneys. Left untreated, complications can be serious and life-threatening. Preeclampsia is a condition that is under reported as some cases progress during childbirth. Among pregnant women in the United States, 5 to 8% develop preeclampsia. The rate of preeclampsia in the US has increased 25% in the last two decades and is a leading cause of maternal and infant illness and death. Preeclampsia typically begins after 20 weeks of pregnancy.

Experiencing Preeclampsia and HELLP Syndrome

Sarah Bender Hope is Homegrown Families Bereavement and NICU Doula. She is a two-time survivor of Preeclampsia and HELLP Syndrome (formerly referred to as Toxemia), a severe variant of Preeclampsia. It’s estimated that 15% of those women will develop evidence of HELLP syndrome. This mean as many as 48,000 women per year will develop HELLP syndrome in the US. in her second pregnancy she had a seizure, which is when the condition is referred to as Eclampsia. Sarah’s cases were critical and forever changed her physical body and her emotional self. Following her pregnancies, Sarah has a deep passion towards providing education and spreading awareness as she knows early detection saves lives.

During my first pregnancy, I was not aware of preeclampsia. I had the very common belief that once I surpassed my 12th week and entered my 2nd trimester, I was in the safe zone. I was not aware that in my 23rdweek of pregnancy, I was in the midst of full-blown preeclampsia and it had progressed to HELLP Syndrome. I had basically EVERY symptom. It may sound like I was not in touch with my body, but truly during my entire pregnancy, I experienced significant morning sickness (all-day & night sickness) and distinguishing the onset of the disease was not glaringly obvious to me. During a routine prenatal appointment, my blood pressure was elevated to 165/105, and I was pouring proteins in my urine. I was rushed to Maternal Fetal Unit at Mission Hospital. When I arrived, my blood pressure had risen to 225/105. After an intense few hours of medical interventions to save my life while ultrasounds and tests checked the baby. I was in full blown HELLP Syndrome and my body was shutting down. It was found that my baby was growth restricted due to the disease and he did not have the third branch of his lungs. I was left with no choice and had to be rushed into an emergency cesarean where my son, Isaiah was born and comfort care was administered to help his remain in peace and cross over the vail only knowing our love.

During the next week, I was deep in my grief journey, and due to the severity of my condition, I had an onslaught of appointments, tests, new medications, and working to get my body healthy. Two years after my first pregnancy, I found myself walking through a subsequent pregnancy. My doctor followed my case very closely as preeclampsia can have a rapid onset. She also consulted with many other specialists to give me the best chance at delivering a baby. At an appointment, prior to any apparent symptoms had surfaced, tests indicated that the disease was reoccurring. We knew that there was a 30-40% chance of preeclampsia reoccurring, however, it is statistically later in the pregnancy and not as severe. The chance of HELLP reoccurring was less than 5%. In this appointment, I realized that my case was one of the rare that was coming back with full vengeance. There were several vital aspects that were different from the first pregnancy. I was at 24 weeks which is right at the cusp of viability, however, the baby was not growth restricted. Because it was caught at the very beginning, I was able to receive antenatal corticosteroid therapy which assists the baby in respiratory improvement in preterm labor. I was able to fight for 5 days to keep my baby in my womb and developing. Every minute at the point is crucial. At 24 weeks 5 days, my son Solomon was born and welcomed into the world by me and my husband, as well as the life-saving NICU team. Sadly, I also developed Eclampsia post-delivery as I had a seizure during my recovery.

It is awful that I had this disease twice in my life. It’s impact has made life-altering effects on my life. I have many medical conditions that I will need to manage for the remainder of my life. My chances of developing Diabetes and Heart Disease are significantly likely. My body and mind require 9 different daily medications. I have been diagnosed with a number of physical and psychological conditions that I work hard to balance. Though I do not let the diagnoses define who I am and how I am known.

I am a Bereaved Mother.

I am a NICU Mother.

I am the mother of a Medically Complex/Fragile Child.

I am a survivor.

I am a warrior.

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Early detection and awareness can absolutely save lives. I am really proud to say that by sharing my story, many people have been more informed and educated. Knowledge is power and this is especially important when you are pregnant. If you are pregnant, know the symptoms and listen to your body. Advocate for yourself as you know when something is off better than anyone. Sending my love to my fellow survivors on this day.

Sarah is a Bereavement and NICU doula. She is a bereaved and MicroPreemie mother, and her own pregnancies and birth experiences ignited her passion to become a voice for other parents facing these unexpected and challenging journeys. After the loss of her first son, she dove headfirst into her grieving and healing process. When the clouds began to part, she began working with other mothers and families who encountered the same tragedy.She is working towards Baby Loss Parent Advocate Certification, has completed a DONA International birth doula training, volunteers with the Pre-eclampsia Foundation Asheville Walk to Remember, as well as the Mission Hospital NICU Family Advocacy Council. Sarah is also the co-facilitator of the monthly perinatal loss support group at the Homegrown Families Health and Education Center.

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