Preeclampsia- A Diagnostic Odyssey
Preeclampsia- A Diagnostic Odyssey
Written By: Neha Suresh, Intern
Preeclampsia is known as the great imitator for its ability to mimic a normal pregnancy’s symptoms. A standard diagnosis involves detecting high blood pressure and proteinuria after the 20 week mark in a pregnancy. Symptoms range from headache and nausea to hazy visibility. Around 80% of birthing people who exhibit symptoms of preeclampsia do not develop the condition.
This is a notoriously difficult disease to diagnose. Therefore, the disease often progresses in severity prior to a diagnosis. Our current understanding of preeclampsia is limited. It is mostly understood to cause inadequate oxygen and nutrient supply to the foetus. If left undetected, it can lead to serious health consequences for both the birthing person and foetus. For the birthing person, these could be life threatening- multiple organ failure, haemorrhaging, strokes, and seizures. For the foetus, inadequate supply of nutrients and oxygen leads to fetal growth restriction, low birth weight, preterm birth and, in some cases, stillbirth. But an early detection could save countless lives. This is where Kalia Health hopes to design a solution with the Kal-PDx strip.
Preeclampsia is most likely to occur in a birthing person’s first pregnancy, and researchers suggest that preexisting heart conditions and diabetes could contribute to the disease. However, the truly unpredictable nature of the disease is revealed when we look at preeclampsia on a case by case basis.
In this article, we follow three preeclampsia survivors in North America through their diagnostic odysseys. As a cohort of developed countries, research and care of preeclampsia here is assumed to be the best in the world. But even here, birthing people emphasize the importance of being aware and being your own advocate. All three of them are channeling their trauma into raising awareness of preeclampsia for future birthing people.
Tara (New York)
Tara has two children, and she experienced preeclampsia during both her pregnancies. During her first pregnancy, she was diagnosed with preeclampsia at 35 weeks when she went in for a checkup. Her amniotic fluids were low, she was suffering from an upper respiratory infection, and her blood pressure was off the charts. She also recalls her hands being clenched in fists when she woke up and feeling extremely tired. She was induced and gave birth after an arduous labor at 35 weeks and 3 days.
Tara observed that a sense of shame accompanies premature deliveries. It is viewed as an inability of a mother’s body to carry the child to term. “What a woman’s body can do is miraculous and should not be taken for granted,” Tara said.
During her second pregnancy, she was diagnosed with preeclampsia in the 28th week. “I remember my doctor telling me that just because you have preeclampsia once, you will not necessarily develop it again,” Tara said. “Preeclampsia is the kind of disease that can change from one hour to the next; it is that unpredictable.”
Unlike her first pregnancy, her symptoms this time around presented themselves abruptly. On her commute to work, her heart rate jumped to a 122. “I felt like I was having an anxiety attack, and I felt the onset of a very specific type of headache. It usually originates from the back of my head,” Tara said.
She was held in the hospital for a week constantly being shifted between the antepartum and labor & delivery floors. The hospital has a policy of delivery at the 34th week mark through a Caesarian section for preeclampsia patients.
“I wasn’t okay with this policy. My train of thought was that if my daughter is okay and my blood pressure is stable, there is no need to deliver the baby without attempting medical intervention first,” Tara said. “I advocated for myself- this is very important. As a mother, knowing your own body is key. I spoke to a lot of nurses, and they educated me about the condition and helped me advocate.”
Tara’s second pregnancy and birth took place during the apex of the pandemic. She remembers feeling isolated, exhausted, and almost like a pin cushion. She elaborates on the need for good insurance during pregnancy in those turbulent times. “I found out that my hospital bill for 2 weeks had crossed $100,000. Fortunately, I had good insurance. I cannot imagine the emotional turmoil that a single mother in my situation [using social services] or Medicaid will face,” Tara said.
Her daughter was scheduled to be induced at 36 weeks and 6 days. Due to the pandemic, Tara was transferred to another birthing facility with extra precautions.“It was like giving birth in a warzone. There was a point when I was allowed to go to the bathroom on a magnesium drip all by myself and magnesium weakens your muscles,” Tara said, “It was a bad situation- only two of us tested negative for COVID on the entire labor & delivery floor. I was surrounded by COVID.”
Tara’s daughter was born on the 37th week, and she did not receive postpartum care due to COVID-19. After this, she made several trips back to the emergency room due to fluctuating high blood pressure. At 13 months postpartum, Tara is still on blood pressure medication and is dealing with postpartum preeclampsia.
“My mother had preeclampsia when she was pregnant with me. It was called toxemia back then. However, she did not have it when she was pregnant for the second time with my brother,” Tara said. ”This was the only piece of knowledge that I knew before I contracted the condition the first time around.”
There were no overlapping symptoms between both the pregnancies, exemplifying the challenge of diagnosing preeclampsia. Tara serves as a great example to illustrate the array of symptoms that preeclampsia can pose even between two pregnancies of the same birthing person.
Alicia (Canada)
Alicia was diagnosed with preeclampsia at the 37th week of her pregnancy, but her treatment team suspected that she may have preeclampsia from the 35th week onwards. She had the classic diagnosis of high blood pressure and proteinuria at first.
A week later, on the 38th week she had vision disturbances, puffiness, and swelling. This was when her care team decided to induce labor.
After several unsuccessful attempts at inducing labor by using Cervidil, the stretch and sweep method, the Foley Catheter, and pitocin, she underwent an emergency C-section at midnight.
Her baby was born early during the 38th week.
About five days after the delivery, Alicia found herself in the Emergency Room again. She was breastfeeding and realised that she was severely breathless. In the hospital, an MRI revealed that the swelling had caused fluid backup into the lungs, causing heart failure. After using Lasix to reduce the swelling, Alicia was discharged. She was allowed to return home without a prescription for blood pressure medication in error, allowing her situation to deteriorate soon after.
Two days later, she felt breathless again and was taken to a different hospital. She was found to be at the beginning stages of an active heart failure. A cardiologist began to follow the case and took detailed notes. “This was the first time I felt like I was being taken seriously. I honestly felt like I shouldn’t have been discharged the first time around,” Alicia said. “More recently the gears started moving, but I had to advocate for that for myself because it was dismissed as lady problems.”
Alicia only had a vague idea of preeclampsia before she contracted the condition herself, she also did not have high blood pressure before or after the pregnancy,
“Preeclampsia is discussed as a rare pregnancy but the statistics suggest that it affects a lot more pregnancies than projected,” Alicia said. “After this scare, I reevaluated my career in marketing. In September, I will be beginning my Masters in Science in Statistics and I hope to work in and impact the maternal health field.”
Samantha (Maryland)
Samantha was diagnosed with onset preeclampsia in the 27th week of her pregnancy. She woke up unable to breathe and with an extremely puffy face. She had gained a little over 20 pounds in the prior few weeks. When she was taken to the hospital, her blood pressure was off the charts, and she had gained over an additional three pounds in the next three weeks.
“I was seen at Johns Hopkins, diagnosed with preeclampsia, and my daughter was delivered all on the same day,” Samantha said.
She has never had a history of high blood pressure, and she comes from a big family with no history of preeclampsia. Now, almost one year later Samantha is still on blood pressure medication. Her daughter, born at 27 weeks, was just 1 pound and 12.9 ounces and spent the next few weeks in NICU (Neonatal Intensive Care Unit). She is healthy and progressing as expected now.
“I couldn’t hold her for almost two weeks and that was difficult and made most mothers feel naturally helpless,” Samantha said. “My daughter will always have a fight story, a very cool origin story.”
This is a mysterious and confusing ailment with an urgent need to expand diagnostic criteria. When asked what improvements and awareness they would like to see having been through the diagnostic odyssey themselves, the mothers had this to say-
“I wish there was more research and resources on the condition for new mothers,” Samantha said. “Take care of yourself to be there for your kids.”
These are verified resources working towards better preeclampsia awareness- Preeclampsia Foundation, Preeclampsia Registry and Society for Maternal-Fetal Medicine.
“Talking about preeclampsia can serve as a great resource. OBGYNs do not communicate the signs and symptoms of underlying conditions to the mother-to-be in the first few appointments. This is the first step of communication breakdown, so be aware, educate yourself,” Tara said.
This facebook group serves as a sounding board for preeclampsia survivors and new mothers- Preeclampsia and postpartum preeclampsia awareness.
“For someone who is diagnosed with preeclampsia, know to advocate for yourself. Make sure to follow up with your questions. You can’t fix a problem you don’t know you have,” Alicia said.