Testimonials of PE survivors
Preeclampsia Stories: A Journey of Resilience and Awareness
Real-life experiences that shed light on the challenges and impact of Preeclampsia
“Every pregnancy is different.” Most expecting women think this before disregarding any symptoms of Preeclampsia – a condition that occurs more frequently in first-time mothers and can cost the lives of both the mother and the baby. It affects 2-8% of pregnancies worldwide [1] and 0.3 to 25.8% in India [2]. From celebrities like Beyoncé and Kim Kardashian to Olympic athlete Allyson Felix, the chances of Preeclampsia occurring are not an exception to anyone.
It’s easy to believe that our pregnancy journey will be smooth and uncomplicated, especially when we see high-profile individuals who seemingly breeze through it. However, the reality is that Preeclampsia can affect anyone, regardless of their status or fame. Every pregnancy carries its own set of risks and challenges.
Preeclampsia, unfortunately, has no cure except for symptom management and delivering the foetus. However, early detection can save both lives. Every life counts. Our previous blogs delved into Preeclampsia’s causes, diagnosis, management, and long-term implications.
In this blog, we explore the stories of Preeclampsia survivors worldwide – real women who have gone through this challenging experience and emerged stronger. These survivors, like us, were caught off guard by the unexpected and experienced fear and anxiety, were overwhelmed by the situation and didn’t know whom to talk to. We can gain valuable insights, support, and hope by learning from their stories.
Beyoncé’s Encounter with the Fatal Complication: Preeclampsia Doesn’t Care About Fame
Beyoncé, a world-renowned singer, faced the dangers of Preeclampsia in her 2017 pregnancy with twins Sir and Rumi. She experienced weight gain (218 pounds by the day she delivered) and high blood pressure. One of her babies’ heartbeats paused a few times, which pushed the doctors to do an emergency C-section [7].
High blood pressure and weight gain are symptoms of Preeclampsia. Women having multiple pregnancies (carrying more than one baby) are more predisposed to developing Preeclampsia [8].
Allyson Felix: When Preeclampsia Challenges an Elite Athlete’s Expectations
Allyson Felix, an elite track & field athlete and Olympian, was diagnosed with Preeclampsia at 32 weeks of gestation. She was surprised to find out that despite her fitness level, she had proteinuria and elevated blood pressure. Her doctor immediately admitted her to the hospital, and she was rushed for an emergency C-section. Her daughter, Camryn, was in the NICU for the first month of her life and was born at 3.7 ounces, lower than the average healthy birth weight [3].
Fortunately, today, both mother and daughter are healthy and fine. Post her experience, Allyson began raising awareness about the condition, especially for Black women [3].
According to the CDC, Black women are 3 times more likely to die from a pregnancy-related complication than White women in the US. Between 2007-2016, Black and American Indian/Alaskan Native women had significantly higher pregnancy-related mortality ratios [4].
Lindsay Powers’ Misdiagnosis: The Importance of Seeking Multiple Doctors’ Opinions
Lindsay Powers, the founder of the #NoShameParenting movement, was motivated by a distressing pregnancy experience with her OB-GYN. Despite getting over 10k steps a day and following a healthy diet, Lindsay’s weight gain during pregnancy led her doctor to suspect her eating and exercise habits were to blame. Despite testing negative for gestational diabetes multiple times, she underwent unnecessary tests. Fortunately, Lindsay received a Preeclampsia diagnosis during a routine appointment with a different doctor, bringing immense relief. She had been subjected to fat-shaming by her previous OB-GYN, unaware that her doctor’s advice of “speed walking on an incline” could have had life-threatening consequences for her and her baby [6].
Lindsay was placed on bed rest to ensure a safe pregnancy and received appropriate precautions to extend it as close to 40 weeks as possible. Ultimately, she delivered her baby through a C-section and was administered magnesium sulphate. When seeking a new OB-GYN for her subsequent pregnancy, Lindsay discovered the gravity of her experience. Her previous doctors had failed to provide a comprehensive picture & she had developed HELLP syndrome during labour which is a severe variant of Preeclampsia. Lindsay’s journey has fueled her commitment to the #NoShameParenting movement, empowering parents and promoting awareness of the complexities and challenges of pregnancy in a supportive, judgement-free environment [6].
HELLP (Hemolysis, Elevated Liver enzymes, and Low Platelet count) syndrome is a rare form of Preeclampsia with a wide range of non-specific symptoms such as fatigue, oedema, excessive weight gain, nosebleed, seizures, etc. After one occurrence, the chances of recurrence increase in subsequent pregnancies [5].
Anne Garrett’s Journey: Recurrent Preeclampsia and the Birth of a Foundation
Anne Garrett, co-founder of the Preeclampsia Foundation, endured the harrowing experience of Preeclampsia in three out of four pregnancies. Initially diagnosed at 23 years old during her first pregnancy, she had a normal pregnancy the second time. Her knowledge then led her to believe that Preeclampsia only affected first-time mothers. However, during her third pregnancy, she experienced symptoms and underwent an emergency C-section. Despite a three-day hospital stay, her high blood pressure persisted. However, medical professionals dismissed her concerns due to the belief that Preeclampsia resolves after delivery. Several days later, she developed intense shoulder pain and exceptionally high blood pressure, prompting a rushed hospital visit, where she was once again sent home. It took six to eight weeks for her condition to improve [9].
Through extensive research, Anne connected her symptoms to HELLP syndrome, bringing some relief through a diagnosis. Nevertheless, she was left traumatised by the experience. When she became pregnant again, she sought out the best possible doctor. She approached her pregnancy armed with medical textbooks, prepared with countless questions, and diligently reported every symptom. Despite developing Preeclampsia once more, proactive care for both her and her baby ensured a positive outcome [9].
It is crucial for women who have previously experienced Preeclampsia to advocate for their health and the well-being of their babies. Subsequent pregnancies carry the risk of recurrent Preeclampsia [11]. Additionally, many women who have had Preeclampsia suffer from mental health issues and may experience post-traumatic stress disorder (PTSD) due to the traumatic nature of the condition [10].
Anne Garrett went on to found the Preeclampsia Foundation along with her then-husband Anil Singh-Molares; Anne’s physician, Dr Thomas Easterling; and another Preeclampsia survivor, Joan Lambert. It is a non-profit organisation that encourages awareness for parents-to-be and propels Preeclampsia research [12].
Preeclampsia Can Run in Families: Julie Melitas’s Story
Julie, born as a result of a Preeclamptic pregnancy, was no stranger to the condition when she embarked on her journey to motherhood. With a family history of Preeclampsia, she knew the risks involved when she became pregnant. Unfortunately, Preeclampsia struck during both of her pregnancies, leading to early deliveries and prolonged stays in the neonatal intensive care unit (NICU). The challenging experiences and the impact on her family prompted Julie to decide not to have any more children. However, she finds solace in understanding the reasons behind her premature birth helped her prepare for the challenges she faced during her pregnancy [14].
While a clear genetic link to Preeclampsia has yet to be identified, there are compelling cases where the condition runs in families. The presence of a family history of Preeclampsia serves as a significant risk factor for developing the condition. By recognising the potential genetic predisposition, individuals can take proactive measures and seek appropriate medical guidance to mitigate the risks associated with Preeclampsia and ensure the best possible outcomes for both mother and baby [13].
A Father’s Perspective on Preeclampsia: Jay Korey’s Experience of Heartbreak and Resilience
Preeclampsia doesn’t just affect mothers; it also takes a toll on the caretakers. Jay Korey and his wife Mary experienced the impact firsthand when Preeclampsia entered their lives while delivering their first child. At the time, the doctors reassured them that Mary had developed Preeclampsia but that everything was fine now without further details about the severity or potential consequences. However, tragedy struck a few years later when their second child was stillborn, and they discovered the true gravity of Preeclampsia [15].
Jay witnessed Preeclampsia’s profound effect on Mary as she became a shell of her former self. She struggled to eat, sleep, and found herself in constant tears. Jay, too, underwent a profound transformation, feeling lost and unsure how to interact with others. The haunting memories of holding their daughter, whom they couldn’t save, consumed his thoughts. Jay took time off from work, but even upon his return, his mind remained plagued by the haunting “what-ifs” and “had-I-s.” Their saving grace during those dark times was their little boy, who brought light and hope to their lives [15].
A couple of years later, Jay and Mary gathered the courage to bring another baby into the world despite their lingering fears. This time, they cautiously approached the pregnancy, undergoing close monitoring and taking every precaution possible. The baby was born prematurely and spent ten days in the neonatal intensive care unit (NICU) before being able to go home. Mary developed chronic hypertension as a result, but despite the challenges, their family emerged strong, healthy, and happy [15].
Conclusion
These compelling stories of Preeclampsia survivors and their loved ones leave us with a profound understanding of the unpredictable nature of pregnancy and the lasting impact of this condition. They remind us of the importance of raising awareness, advocating for comprehensive care, and supporting one another through the challenges of Preeclampsia. As we reflect on these experiences, let us ask ourselves: How can we come together to ensure that every pregnancy receives the attention, care, and support needed to minimise the risks and effects of Preeclampsia?
Limitations and Gaps in Evidence
While writing this article, we recognised a notable absence of accounts and research pertaining to the experiences of Indian women concerning this condition. This glaring gap in evidence points to the urgent need for further investigation and analysis within the Indian context. A comprehensive understanding of the prevalence, risk factors, and management of Preeclampsia in India needed to be adequately represented in the existing literature.
References:
[1] WHO recommendations for Prevention and treatment of pre-eclampsia and eclampsia.
[2] Dhinwa M, Gawande K, Jha N, Anjali M, Bhadoria A, Sinha S. Prevalence of hypertensive disorders of pregnancy in India: A systematic review and meta-analysis. Journal of Medical Evidence. 2021;2(2):105.
[3] CDC. (2023, March 9). Hear personal stories of pregnancy-related complications. Centers for Disease Control and Prevention. https://www.cdc.gov/hearher/allysonfelix/index.html
[4] Infographic: Racial/Ethnic Disparities in Pregnancy-Related Deaths — United States, 2007–2016. (2022, April 13). Cdc.gov. https://www.cdc.gov/reproductivehealth/maternal-mortality/disparities-pregnancy-related-deaths/infographic.html
[5] Malmstrom O, Morken NH. HELLP syndrome, risk factors in first and second pregnancy: a population based cohort study. Acta Obstet Gynecol Scand 2018; 97:709–716.
[6] Powers, L. (2020, March 30). I had preeclampsia symptoms during my pregnancy—but my OB-GYN missed them. Health. https://www.health.com/condition/pregnancy/preeclampsia-symptoms-misdiagnosed
[7] Spalding, R. (2019, April 18). 7 celebs who had preeclampsia during pregnancy, including Beyoncé, Kim kardashian, & more. Romper. https://www.romper.com/p/7-celebs-who-had-preeclampsia-during-pregnancy-including-Beyoncé-kim-kardashian-more-17046753
[8] Preeclampsia. (2022, April 15). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/preeclampsia/symptoms-causes/syc-20355745
[9] Website. (n.d.-b). Preeclampsia – one woman’s story. Preeclampsia Foundation – Saving Mothers and Babies from Preeclampsia. Retrieved July 13, 2023, from https://preeclampsia.org/our-stories/one-womans-story
[10] Website. (n.d.). Preeclampsia – not just physical: The psychological burden of preeclampsia and HELLP syndrome. Preeclampsia Foundation – Saving Mothers and Babies from Preeclampsia. Retrieved July 13, 2023, from https://www.preeclampsia.org/the-news/community-support/not-just-physical-the-psychological-burden-of-preeclampsia
[11] Gary A. Dildy, Michael A. Belfort, John C. Smulian, Preeclampsia Recurrence and Prevention, Seminars in Perinatology, Volume 31, Issue 3, 2007, Pages 135-141, ISSN 0146-0005, https://doi.org/10.1053/j.semperi.2007.03.005
[12] Eleni Z. Tsigas, The Preeclampsia Foundation: the voice and views of the patient and her family,
American Journal of Obstetrics and Gynecology, Volume 226, Issue 2, Supplement, 2022, Pages S1254-S1264.e1, ISSN 0002-9378, https://doi.org/10.1016/j.ajog.2020.10.053.
[13] Williams, P. J., & Broughton Pipkin, F. (2011). The genetics of pre-eclampsia and other hypertensive disorders of pregnancy. Best practice & research. Clinical obstetrics & gynaecology, 25(4), 405–417. https://doi.org/10.1016/j.bpobgyn.2011.02.007
[14] Website. (n.d.-a). Preeclampsia – it is part of me: Generational preeclampsia. Preeclampsia Foundation – Saving Mothers and Babies from Preeclampsia. Retrieved July 13, 2023, from https://preeclampsia.org/our-stories/it-is-part-of-me-generational-preeclampsia
[15] Website. (n.d.-a). Preeclampsia – holding it all together. Preeclampsia Foundation – Saving Mothers and Babies from Preeclampsia. Retrieved July 13, 2023, from https://www.preeclampsia.org/our-stories/holding-it-all-together