What would you do if during your final weeks of your first pregnancy, you otherwise felt fine and once contractions started you went to the hospital — expecting a an uncomplicated labor and birth — only to find that your blood pressure is suddenly elevated and you’re being rushed off to have an emergency Cesarean section? Or what if, a week or two before your expected due date, you notice that your ankles have been swollen for a few days and during your last obstetrical visit your blood pressure was up, but not too much, and you find later that day there is protein in your urine, requiring immediate hospitalization? What do you do? How do you feel about this? Why is this such a big deal all of a sudden? A woman’s first pregnancy can be an exciting time accompanied by unfamiliar changes both physically and emotionally. Preeclampsia is not always recognized by the expectant mother or her doctor — signs can be missed in a time of discomfort.
The portrayal of Lady Sibyl’s death from preeclampsia on Downton Abbey put the condition on people's radars, though the specific medical details may not have been strictly correct, historically. Then, as now, there was no single test to unequivocally determine that a woman has preeclampsia. And not every pregnant woman brings all her symptoms up during a checkup, because “it’s probably nothing” or she doesn’t know to pay attention to the signs. Not all women have the same symptoms at the same point during pregnancy, so bringing any symptoms at any point to the doctor’s attention is essential.
Each woman’s story of preeclampsia is as different as she is. All our interviewees had preeclampsia with their first, and sometimes only, pregnancy, except our final interviewee who developed it twice. And although statistically, delivering the baby is usually the “cure” for preeclampsia, that isn’t the case for every woman.
Jenneviere had a firm birth plan with a midwife, birthing bath, no medication, no hospitals, and no plan B — circumstances changed and she needed to go to the hospital for a c-section. Kate also planned to have a non-medicated birth with a midwife and birthing bath, but had an obstetrician as a backup. Luckily the expertise of both the midwife and OB-GYN helped save her. Kathleen had a planned c-section because her baby was breech, and unexpectedly developed HELLP after delivery. Alisha had symptoms of preeclampsia but didn’t tell her doctor and was diagnosed with it at 37 weeks; she also developed HELLP after delivery. Krystal also had some signs of preeclampsia that she felt went unnoticed by the doctors but relied on a doctor in the family who was helping her. She delivered at 36 weeks and remembers recovering uneventfully once home. Finally, Elizabeth had two pregnancies with preeclampsia, developed HELLP after the second delivery, and was advised not to have any more children.
Knowledge, awareness, and self-advocacy all help in managing and diagnosing the condition. Let these women’s stories guide you.
What To Know About Preeclampsia
Preeclampsia is diagnosed when a woman develops high blood pressure after 20 weeks of pregnancy and can also include pressure greater than 140/90 mmHg, increased swelling, and protein in the urine. However, not every pregnant woman with preeclampsia has protein in her urine test, so abnormally high blood pressure may be the only indication and other tests may be needed. Depending on the week of onset, preeclampsia can lead to preterm birth because, usually, the delivery of the child is the “cure” for the problem. That said, preeclampsia can occur up to six weeks after delivering a baby. Eclampsia affects brain function, and can result in seizures or coma.
During pregnancy, a serious complication of high blood pressure is HELLP syndrome, which includes damage to the liver and blood cells. HELLP is diagnosed by a blood test and is often felt as intense abdominal pain — worse than contractions — and can take months postpartum to fully recover.
According to the National Institute of Health about 3.4 percent of pregnancies in the U.S. and about 2 to 8 percent of pregnancies worldwide feature preeclampsia, while the Preeclampsia Foundation estimates that preeclampsia and related high blood pressure disorders (of which there are several) impact 5 to 8 percent of all births in the United States. Preeclampsia and eclampsia account for about 10 to 15 percent of maternal deaths worldwide and a more severe complication called HELLP syndrome occurs in about 20 percent of all women with severe preeclampsia.
So how do all these statistics and scary-sounding diagnoses roll out in real life? On the upside, knowledge, awareness, and self-advocacy all help in managing and diagnosing the condition. Let these women’s stories guide you.
Kate, 34, Diagnosed At 35 Weeks Pregnant
Kate, who was 34 when she became pregnant and 35 at birth, felt she was well-informed about all aspects of pregnancy from reading articles and books as well as taking a variety of classes, and yet she was unaware of preeclampsia. Her blood pressure started to fluctuate in her third trimester, but without a definitive test for the disorder, Kate doubted that she had this fatal illness and held out hope for her ideal birth plan with her midwife in a relaxing birthing center. Since she had been ill with all day “morning sickness” and vomiting for the majority of her pregnancy, she dismissed severe swelling and accelerated weight gain as part of her difficult but normal pregnancy. Around 35 weeks, Kate’s midwife recommended she go to the backup obstetrician because of her high blood pressure readings and the trace amount of protein in her urine. The OB was concerned that she was developing preeclampsia and insisted she have daily appointments to check her blood pressure.
By this time she was 'seeing stars.' Once her husband told the check-in staff 'preeclampsia,' she was rushed to a triage room.
At 36 weeks, the doctor’s office took a blood panel and the markers were frightening. The obstetrician wanted her to come in for overnight observation but Kate resisted and asked for a second blood panel. She was desperate to make it to 37 weeks so that her baby would be full term. But with the results of the second panel being more dire plus her other symptoms, Kate was strongly, jointly advised by her doctor and the midwife to get to the hospital for an emergency induction — it was Christmas Day.
She and her husband returned from vacation the next morning and by this time she was “seeing stars.” Once her husband told the check-in staff “preeclampsia,” she was rushed to a triage room but was zero centimeters dilated. After her first round of Cervidil to get her to dilate, she was only at 1 centimeter dilation. She asked the doctor what her chances were to deliver vaginally. She had to give up her ideal birth plan but didn’t want to have a c-section. The doctor told her she had a 50 percent chance of a c-section and a 2 percent chance of having the non-medicated vaginal birth she had planned for.
After a second round of Cervidil, she was only 2 centimeters dilated so they started Pitocin to try to speed up the process and start contractions. After six hours of intense contractions without an epidural, she was fully dilated and pushing, which surprised the doctor who ran into the room still holding her coat and purse, having dashed up from the parking lot.
A little over 48 hours after arriving at the hospital, Kate gave birth, without any pain medication, to a healthy baby girl. Kate remembers the doctor saying to her, “Welcome to the two percent, Kate!” Over the course of the two days before birth and the 24 hours after, she was administered several bags of magnesium sulfate and antibiotics for strep. She remembers she felt groggy and her swelling didn’t go down. Four days later, after having a few consistent normal blood pressure readings, she and the baby went home. Looking back, Kate says that the work she did to prepare for a non-medicated water birth helped her stay strong and remain calm during these life-threatening circumstances. She may not have had her dream birth, but she is proud of her body for what it accomplished and thankful that she survived this ordeal. She is grateful to her midwife, and later her obstetrician, for their diligence and pressing concerns.
Jenneviere, 26, Diagnosed During Labor
Jenneviere, age 26 at the time of pregnancy, had a very clear birth plan that included her midwife and two apprentice midwives, and being at home. Her plan didn’t include going to the hospital — she had never made any other plan if her home birth went wrong. Her blood pressure was elevated at her last midwife visit (24 hours before she would eventually go into labor), so the midwife told her to check it daily and report back.
The next day, while taking her blood pressure, she started having contractions. After 10 hours of labor at home with the midwife, the baby was stuck face up behind a lip of her cervix which was stuck between her pelvic bone and the baby’s head. The midwife went with her and her partner to the hospital. Once there Jenneviere heard “preeclampsia” for the first time related to her body and not just something mentioned to pregnant women to be aware of. Since she was still trying to follow her birth plan any way she could, the doctor gave her the option to take the epidural and then a maximum dose of Pitocin to encourage the baby to move into a different position to allow her to give birth vaginally. Several hours later, there was still no progression and she had to go in for a c-section.
The transition was too traumatic and overwhelming, and she was completely unprepared for what happened.
Once the baby was delivered, Jenneviere felt like she was going to pass out and was unable to focus or see well. Gratefully, the midwife was with her for support while all the other staff and her partner made sure the baby was fine. After three days of recovery, she checked herself, and her healthy baby, out of the hospital. She felt that she needed to physically and psychologically recover at home.
However, the transition was too traumatic and overwhelming, and she was completely unprepared for what happened. She didn’t have a strong supportive base at the time, which was exacerbated by postpartum depression, unbeknownst to her at the time, as she didn’t realize that her struggle at home was harder than for most. She was able to eventually get psychological help to process the experience and how she related to it, but still, she finds it difficult at times. Jenneviere has not had any other children.
Kathleen, 33, Diagnosed At Nine Months Pregnant
Kathleen was 33 at the time of pregnancy and did not know she had preeclampsia until the morning of her planned c-section. In fact, because she was afraid of worrying herself unnecessarily, she avoided doing much research on pregnancy complications, but did know the Lady Sybil storyline on Downton. She had her normally low blood pressure during the pregnancy until about a month before, but as she had terrible bronchitis she and her doctor thought that the rising blood pressure could be attributed to her illness. Additionally although she had swelling in her feet, she assumed all pregnant women did and never mentioned it to her doctor. During that month she felt “off” but since she was already very sick, didn’t mention that either. It was a few nights before the c-section that she felt there could be complications because of how she felt.
She had the more severe condition known as HELLP, requiring an immediate c-section in order to save her life.
The c-section was planned, but once there a blood sample test showed that her platelets were dangerously low — she had the more severe condition known as HELLP, requiring an immediate c-section in order to save her life. This was her most frightening moment: when the doctor told her what was wrong and that she had to have the c-section immediately. She says that the extreme urgency of it was terrifying.
Post-surgery she was miserable. She was administered a magnesium sulfate drip and had an adverse reactions to the painkillers. Additionally, she had severe pain in her abdomen from the liver problem and was feeling very paranoid. For Kathleen, a normally calm person, the whole situation had her in tears and very worried. Ultimately, though, she is grateful her baby is healthy and thankful the baby was breech, which required a scheduled c-section. She’s not sure anyone would have caught the HELLP in time, in which case she might not be here now.
Alisha, 26, Diagnosed At 37 Weeks
Alisha, who also developed HELLP, was 26 during her first pregnancy and found out she had preeclampsia at 37 weeks, although it wasn’t until 24 hours after delivery she showed signs of HELLP. Initially, she had some symptoms of preeclampsia that she dismissed and didn’t tell the doctor about: seeing “spots,” light sensitivity, and swelling. A few hours after her last checkup, the doctor’s office called her back in because there was protein in her urine and, although her blood pressure was normal, they wanted her to go to the hospital immediately for observation. After a full day of observation, her blood pressure went up and the doctor explained she was on the verge of developing preeclampsia. The doctor’s advice was that they induce her that evening since she was already 37 weeks pregnant.
It was so painful she was afraid she might die right there, and finally convinced the nurse to call the doctor. The blood test showed she had HELLP.
Approximately 24 hours after delivery, in the middle of the night, Alisha was having severe abdominal pains and the nurse she told was hesitant to disturb the doctor. Alisha was in more pain than during delivery, it was so painful she was afraid she might die right there, and finally convinced the nurse to call the doctor. The blood test showed she had HELLP. By the time the results came back, her symptoms were naturally subsiding, however, according to her doctor, if Alisha was older, less healthy, or a smoker it could have been much worse. Alisha has had another child recently without preeclampsia during pregnancy or after.
Complicating matters, her daughter was born healthy at 37 weeks, but she was only 5 pounds and 10 ounces and lost too much weight in the following 48 hours. Alisha remembers that the next few days were a grueling combination of pumping, syringe feeding, and supplementing with donor milk to get the baby’s weight up while Alisha herself was still feeling utterly terrible from her own health complications. The stalwart support of her husband through all this was the main thing that gave her strength and comfort.
Krystal, 25, Diagnosed After Delivery At 36 Weeks
Krystal was 25 at the time of her first pregnancy, and although she had preeclampsia the first time, she didn’t with any of her four subsequent children’s pregnancies. Although she felt fine, her father in law, a doctor, noticed she had swelling at her three-month mark. He advised her to go on a strict diet, just in case. Until her father-in-law started asking questions, she had no idea about preeclampsia.
One of the doctors did eventually notice the swelling, but Krystal remembers that no one was concerned about it and the baby’s vital signs were all normal.
The first missed sign by the doctors was her blood pressure. Naturally she has low blood pressure, so when hers went up it was in the normal range and went unquestioned. What was normal for most people was not normal for her. The second missed sign was her “weight gain,” which was actually swelling. The doctors in the practice she went to rotated, so her checkups weren’t consistently with the same doctor, and the only comment was “watch your weight.” One of the doctors did eventually notice the swelling, but Krystal remembers that no one was concerned about it and the baby’s vital signs were all normal. At this point Krystal didn’t protest for more attention to these symptoms because she no longer trusted the doctors and felt her father-in-law was a sound source and that he was keeping a watch on her.
Krystal says that the delivery went as expected at 36 weeks and the baby was healthy. It was only after her delivery that her primary doctor told her she had preeclampsia and they had given her antibiotics, but otherwise the condition seemed to have resolved itself. She was the most grateful for her father-in-law and the support of her family. She’s gone on to have three other children, including twins, without preeclampsia.
Elizabeth, 26, Diagnosed With HELLP After Delivery
Let’s end these stories by going back to the mid 1970s. Elizabeth was 26 during her first pregnancy and 30 by the time of her second. Both pregnancies resulted in preeclampsia; the second one was so severe the doctor recommended she never have children again. Three days before her first delivery, Elizabeth's ankles were so swollen she couldn’t get her socks on and had to wear flip flops, but her blood pressure wasn’t high. She went to the hospital after her water broke and they induced her. They did a c-section only because she hadn’t dilated, but interestingly Elizabeth developed preeclampsia postpartum. They administered magnesium sulfate and she required a blood transfusion unrelated to the preeclampsia. Her recovery in hospital was two weeks.
Unbeknownst to Elizabeth, the head nurse didn’t expect Elizabeth to survive the day.
Fast forward a few years, she has stable blood pressure, no protein in her urine, and not very swollen ankles. Having had postpartum preeclampsia before, and now with a new doctor at a new hospital, he scheduled her for a c-section as a precaution. Again, once the baby was born via c-section, her blood pressure went up very high, a blood test showed HELLP, and she was having trouble breathing. They intubated her and she woke up with a tube down her throat but able to breath again. About 12 hours after delivery her blood pressure was so high and she had no urinary output for about 10 hours that the doctor and nurses assumed renal failure. Unbeknownst to Elizabeth, the head nurse didn’t expect Elizabeth to survive the day. Yet, somehow she recovered and went home with the recommendation to not have any more children.
Elizabeth wasn’t completely ready to give up the idea of another child until several months later, she suddenly felt severe abdominal pains. Long story short, she had a strangulated hernia and needed surgery right away. In order to avoid a possible third surgery inside of one year, she and her husband decided she should get a tubal ligation (“tubes tied”) during the hernia operation. Because of the intensity of these experiences and how professional the head nurse was during her second delivery, Elizabeth decided to become a nurse and ended up working on a maternity ward for many, many years after.
Their Advice For Pregnant Women
Jenneviere’s best advice is: be pragmatic. No matter what type of birth plan you have, or reading you do before labor, have a well-considered secondary and tertiary plan making sure you go through not only the logistics, but the emotional expectations of each scenario. Being unprepared meant that she was rushed through a series of decisions that she wasn’t always a part of and wasn’t ready to go through.
Kate is convinced that if she had been in a rural area, far from a local hospital with a maternity ward, and not in Los Angeles, Calif., like she was, that she would likely be dead. It was only because she was being seen daily by either her midwife or OB in the last week of her pregnancy that her preeclampsia didn’t kill her. Her best advice to other women is to simply be aware of all the signs of preeclampsia and take it very seriously. And if they do end up with preeclampsia, to allow themselves the freedom to mourn the loss of their dream birth. She wants to thank her husband and doula for supporting her and giving her the space and time to grieve — both during labor and in the days after giving birth.
Kathleen wants to encourage women to be their own best advocate. Speak up for yourself, and don’t be afraid to tell your doctor about even the smallest or weirdest symptom.
Alisha’s also believes you should be your own advocate. She learned to trust herself when something wasn’t right, and to bring it up with the doctor — no matter what. There can be many strange things happening to your body while pregnant, it’s hard to know what is normal and what isn’t, and she feels one’s healthcare provider is there to help you differentiate between the two. She’s grateful to her doctor for inducing her early, so bring up everything!
Krystal’s advice is to speak up, especially if a doctor or nurse is not familiar with your medical background to notice subtle changes in you. Be sure to make your concerns and observations known, and to not “freak out” if it happens to you. It can be treated and you should know what to expect.
Elizabeth is most grateful for her family’s support. Although she was weepy for a while after she went home, she attributes the women in her family and her husband’s family to her recovery. Having someone help around the house, with the babies, and with her own needs — because she couldn’t do it herself — was a life saver.
Although all these stories have happy endings for the children, and mostly happy endings for the mothers, not all women who get preeclampsia, eclampsia, or HELLP survive delivery. There are many heart wrenching stories of loss posted on the Preeclampsia Foundation website, as well as information and resources about preeclampsia and the other high blood pressure conditions that a pregnant woman can experience.