Five days after leaving the hospital with her baby in 2021, Terra Cole Brown passed out at her home in Oakland, Calif.
She was able to get up, only for the same thing to happen the next day, landing her in the emergency room, where she was let go after they weren’t able to find anything wrong. The next day, after she passed out for the third time, the paramedics took her back to the hospital where she had had her caesarian section.
At the hospital, Cole Brown was treated for a bleeding ulcer, which had been made worse by Tylenol that she had been told was alright for her to take during pregnancy. She was also told something that had never been said to her directly before – that she had preeclampsia.
After her cesarean section, Cole Brown had spent four days in the hospital and had been discharged with pain medication after asking to leave. After the surgery, Cole Brown recalled, she was given a lot of medication. When she told medical personnel that she didn’t want any more, they told her, “If we don’t give you this medicine, you’re going to have a stroke.”
When she asked to leave, Cole Brown recalled that her doctors were “looking at me like (I was) crazy.”
She was sent away with discharge papers stating that she had preeclampsia, along with medication. Though she was told on a basic level how to take the medication she was provided, Cole Brown recalled that she didn’t receive any written instructions or notes on the medication.
After passing out and being brought to the hospital, Cole Brown was finally told directly by one of her doctors that she had preeclampsia.
“I was like, ‘Why did you guys let me leave the hospital?” said Cole Brown.“(The doctor) said in California, you could check yourself out (and) they’re not supposed to persuade you to stay. I said ‘But the language that was being used didn’t alarm me. I just have high blood pressure. That’s kind of normal. Preeclampsia is something different.”
What is preeclampsia?
Preeclampsia is a disorder that raises the blood pressure of pregnant and postpartum women to the point which, left untreated, can lead to negative health effects for the person and for their child. These negative effects may include organ failure, seizures and death. According to the Preeclampsia Foundation, blood flow in the placenta can also be negatively impacted by preeclampsia, leading to smaller sized infants.
Preeclampsia occurs after about 20 weeks into a pregnancy or, in the case of postpartum preeclampsia, after a pregnancy. According to the March of Dimes, preeclampsia affects 1 in 25 pregnancies in the United States. Having one pregnancy with preeclampsia makes a person more likely to have preeclampsia in a future pregnancy, and affects future health outcomes. For example, people who have had preeclampsia have a higher risk of developing hypertension, along with cardiovascular and kidney disease in.
There is currently no cure for preeclampsia, though the early delivery of the baby, either via cesarean section or induced labor, is used as a first step to help the pregnant person “bounce back,” according to Laney Poye, director of communications and engagement at the Preeclampsia Foundation. If the child is delivered before 37 weeks, they will be premature, and their bodies being less developed than full term infants puts them at potential risk for various health concerns, including trouble breathing and a weaker immune system.
To prevent preeclampsia, those at high risk may be prescribed low dose aspirin to improve blood flow in the placenta and potentially allow the infant a longer time to grow and develop in the womb before delivery. To treat preeclampsia, drugs that lower blood pressure during pregnancy and drugs preventing seizures may be prescribed. In 2023, The Food and Drug Administration approved a screening tool for preeclampsia that tests the levels of two proteins in the body. This screening tool is currently being used in hospital settings.
While risk factors for preeclampsia include pre-existing hypertension, diabetes and obesity, many otherwise healthy people may still develop preeclampsia.
“There are patients (who) get taken completely off guard because they’re perfectly healthy – marathon runners, healthy weight, healthy diet, (who) go on to have very severe preeclampsia. There are also women out there (who) may not eat the best (who) do go on to have healthy pregnancies. In our society, there’s a lot of stigma and stigmatization about (a) mother’s choices. At the foundation we really emphasize that you didn’t do anything wrong that caused your preeclampsia. This is a very complex condition that can have a multitude of reasons (why) it might occur in you,” said Poye.
Disparities in preeclampsia
While anyone who can become pregnant has the potential to go through preeclampsia, some are more likely than others to develop the condition.
“We know that Black women are more likely to get preeclampsia than other women,” said Dr. Cornelia Graves, an obstetric gynecologist in Nashville and medical director of Tennessee Maternal Fetal Medicine.
“There are also other brown women who get preeclampsia at higher rates, including Indigenous populations and Asian Indians.”
According to Dr. Angie Lobo, a nephrologist and fellow at the University of Minnesota, socioeconomic and biological factors may contribute to disparities in preeclampsia.
“When we talk about preeclampsia, one of (the) biggest risk factors is women who already have hypertension,” said Lobo. “A woman who has (a lower) socioeconomic status, terrible access to health care, (and isn’t) able to buy fresh fruits and vegetables can’t control her risk (of developing) hypertension.”
When that same woman gets pregnant, said Lobo, she is more likely to develop preeclampsia and have to deliver her baby earlier.
“Now she has all the risks with the preterm baby that she needs to take care of. Her own health becomes secondary. Now her risk doubles (or) triples of having cardiovascular events, kidney health events throughout her life.”
Biologically, said Lobo, APOL1 gene variants commonly found in people of African descent, which have been associated with higher rates of kidney disease, may be linked to greater numbers of Black women developing preeclampsia. Specifically, Lobo referenced a 2018 study that indicated if a developing fetus has one or both APOL1 variants associated with kidney disease, the birth parent had a greater risk of preeclampsia.
According to Graves, talking about the social determinants of health, such as access to food and insurance, does not entirely account for poorer maternal health outcomes.
“We do know that the structural racism in the United States is a main cause of disparity,” said Graves, who is on the racial disparities task force at the Preeclampsia Foundation.
“They love to talk about social determinants of health, but that’s not a proxy for race. All Black women (including those who are college educated and have insurance) are more likely to die or have poor outcomes in childbirth than a non-Hispanic white woman.”
Stories
Cole Brown is not the only mother with a story of preeclampsia – or even the only person who received less than adequate care.
Kianna Lilly, who lives in St. Paul, was also not told she had preeclampsia during her pregnancy. It was only after she woke up in pain one day that her mother – a nurse – told her to check her blood pressure using a machine they had available in the house.
“It was very high, alarmingly high,” said Lilly. She and her mother went to the emergency room, where they confirmed that Lilly was going through preeclampsia, and, Lilly recalled, “I was in danger of having a seizure and losing my life and my daughter’s life.”
Lilly had an emergency cesarean section that day in 2014, where her daughter was delivered at 32 weeks, though the baby had stopped growing at 26 weeks and was smaller than expected.
Mother and daughter both experienced long term health issues as a result of preeclampsia and the resulting preterm delivery.
In Lilly’s case, she believes her young age – she was 24 when she was pregnant with her daughter – as well as her racial identity led to the hospital and her midwife not taking her concerns seriously during her pregnancy. She had previously noticed that her stomach didn’t appear to be growing, and was concerned.
“I can attribute (my preeclampsia not being noticed) to them thinking that I was young and I didn’t know what I was talking about. I can attribute it to me being a Black woman (and) not being heard,” said Lilly. “I know that doctors and hospitals really don’t take into consideration when Black women say they’re in pain or when they’re not feeling well, but I was raised by a nurse and I was raised to know my body. I was raised to know how to express and explain my symptoms.”
The nature of the health care service was an issue for Elle Mayeart, who had preeclampsia during her pregnancy with her son, who is now 11 years old. While Mayaert is not a person of color, her own experience pushed her, in part, to leave the health care system, where she had previously worked as a nurse.
“I got out of the health care system because it was all too vivid to me – the disparities and the biases held within it,” said Mayaert.
A friend from nursing school told Mayaert that her concerns had been dismissed because she was “too loud and too assertive” in an emergency situation.
“She almost didn’t make it. And she ended up having a stroke during her birth or right after her birth. She ended up making it. But she feels this way and I feel this way – that if she had not been Black, that they would’ve listened to her, or if she had been with her chosen (OBGYN) they would’ve listened to her.”
In Mayaert’s own case, having a doctor actively listening to her made all the difference. When she arrived for an appointment at 22 weeks, she mentioned to her doctor that she had very abruptly gained 10 to 15 pounds and that she “finally felt pregnant.”
The doctor decided to draw Mayaert’s blood as a precaution only to come back and tell Mayaert that she would be delivering her baby that day. Mayaert was going into renal failure via preeclampsia.
“Nineteen hours and a botched epidural later, (my son) came out,” said Mayaert. “It was kind of scary during the process because they kept monitoring my vitals and the baby’s vitals and they prepped the (operating room) for me a couple times. At the last minute they’re like, ‘OK, I think you’re stable enough here.’”
Though Mayaert developed a vein disease in the week of her son’s birth, her son, she said, has had no long term health impacts resulting from preeclampsia. The experience also contributed to her decision not to have more children.
Dionne L. Stalling, executive director of Rare and Black, an advocacy organization focused on Black people living with rare diseases, did not know she had had preeclampsia during her first pregnancy in 1989. She was told that she had toxemia – another, now outdated name for the disease – along with gestational diabetes.
Later, in 2003, during her second pregnancy with her daughter, where she was diagnosed with preeclampsia early on, Stalling’s vision began to be affected – though she had asked those around her if they thought it was dark while she was preparing for her cesarean section, they told her it wasn’t. After she asked nurses to shine a light into her eye around three days after her daughter was born because she could no longer see out of her right eye, her OBGYN told her over the phone that the hospital nurses had contacted him suspecting that Stalling had postpartum psychosis.
After being referred to an ophthalmologist and then to a retinal specialist after the birth, Stalling discovered what happened to her vision.
“My blood pressure was so high throughout the pregnancy (that) fluid (built up) behind (the eye),” said Stalling. “That fluid gets heavy and it lays on the retina and my retina was totally detached.”
Stalling underwent three different surgeries to regain her vision, but as a result can no longer take steroids, greatly limiting the medications she can be prescribed for other conditions.
“It has created a ripple effect,” said Stalling.
New research
At Mayo Clinic, new research has the potential to drive future treatments for preeclampsia. This research, led by Dr. Vesna Garovic and Dr. Sonja Suvakov, found that certain biomarkers – measurable cellular processes and changes – had accumulated in women who had previously had preeclampsia. These biomarkers are associated with senescence – a process where cells stop dividing but do not die, and start to cause inflammation in the body.
While it’s currently unclear whether the increases in these biomarkers are the result of preeclampsia or are related to the underlying causes of preeclampsia, tackling these biomarkers may make a difference in treating preeclampsia.
“It opens the venue for treatment because there are medications called senolytics that can treat processes that are associated with (the) accumulation of these cells that have (a) senescence profile. So it really opens the venue for new treatment, which currently is not available, because at present, we don’t treat a mechanism of preeclampsia. We are treating symptoms and clinical signs such as high blood pressure,” said Gavoric.
While those analyzed in this particular study were mainly white women, Garovic recognizes the need for more diverse clinical studies in the future, noting that a larger and more diverse patient population should be tested as well to see if the results of this particular study hold true.
Advocating for one’s self
Though Cole Brown, who gave birth at around 43 years old in 2021, had more appointments than a younger parent would have, she doesn’t think she received enough information about pregnancy from health care professionals.
“I expect(ed) that there (would be a) sort of orientation – you’re pregnant and this is what’s going to happen, these are the things that you should read and these are classes we have for you,” said Cole Brown. “These hospitals with their missions posted and plastered stating that they are patient-centric are a lie. You’re not patient-centric, because you’re not giving me any information.”
Cole Brown advises pregnant individuals to read, ask questions and to find resources.
“Facebook was a great resource for me – (the) mom groups were helpful and we had several trans men who were pregnant in our groups,” said Cole Brown. “Find those spaces, because no one’s gonna give them to you.”
Lilly’s advice is to advocate for themselves, as well as to change providers if concerns are not being addressed.
“If you’re not getting the response from your providers that you are seeking, seek more than one opinion,” said Lilly. “You know what’s going on with your body, so find someone who will hear you.”
Deanna Pistono
Deanna Pistono is MinnPost’s Race & Health Equity fellow. Follow her on Twitter @deannapistono or email her at dpistono@minnpost.com.
