(*Trigger warning*: this story is about pregnancy loss.)
When I recently reached out on social media to find women who had experienced preeclampsia, Kerry was one of the first to reply.
A sharp, vivacious, and vibrant 36-year-old nurse practitioner, Kerry seems like the last person you’d imagine developing preeclampsia, a poorly understood pregnancy condition characterized by high blood pressure and other signs of organ damage.
Of course, that is part of what makes preeclampsia so dangerous. It affects 2-8% of all pregnancies in the U.S., Yet it’s difficult to know whom it will strike, or how it will proceed. Its disease course is notoriously unpredictable.
The best known risk factors—pre-existing diabetes, autoimmune diseases, kidney problems, or high blood pressure, carrying multiples, preeclampsia in a prior pregnancy—flag only a tiny fraction of the women who develop preeclampsia. Most have none of these risk factors.
Pregnant for the first time, everything proceeded smoothly until 34 weeks. Then Kerry noticed her ankles and feet had swollen and her whole body felt sluggish. As a nurse practitioner, she knew her symptoms could signal more than just third trimester malaise. They were common warning signs of preeclampsia. She immediately checked her blood pressure with an at-home monitor.
It measured 170/110. Dangerously high. (Over 140/90 is high; over 160/100 is considered severe.) She phoned her doctor. Later that day, when her doctor rechecked her blood pressure, it had dropped a bit, to 160/100, but was still clearly high. Her doctor diagnosed her with “mild preeclampsia” and prescribed Labetalol, a blood pressure lowering medication.
Over the next two weeks, she monitored her blood pressure mostly at home, and seeing her doctor for bi-weekly checkups. It remained elevated. Twice her doctor increased her medication dosage.
“On the day of my baby shower… my face was very swollen and my systolic were 170s. I called the office to make them aware. The doctor said, ‘You can come in if you want, but we won’t induce because of high blood pressure alone so we mostly would tell you to keep monitoring.’ So I stayed home.”
In its latest clinical bulletin, published in early 2019, the American College of Obstetricians and Gynecologists considers any blood pressure readings above 160/110 a “severe feature”—one signaling a high risk of future serious complications for the mother and her baby and a clear indication for inducing labor. Other severe features include low platelet counts, elevated liver enzymes, visual disturbances such as seeing floaters, fluid in the lungs, and signs of kidney dysfunction.
At 36 weeks 2 days, Kerry went in for a fetal nonstress test to check on her baby. Instead of showing variability with movement, his heart rate remained stable, a sign of fetal distress.
Like many women with preeclampsia without other severe symptoms (such as signs of liver dysfunction, abdominal pain, or brain swelling), Kerry was scheduled for an induction at 37 weeks 0 days.
Preeclampsia often—but not always—resolves shortly after delivery, making early delivery a common treatment. So common, in fact, that preeclampsia accounts for 15% of all preterm births in the U.S.
At 36 weeks, Kerry and her baby fell in a medical gray zone, one where doctors must balance the risks from preeclampsia to the pregnant mother and her developing baby with the risks of preterm delivery for the baby.
According to the American College of Obstetricians and Gynecologists (ACOG), the risks of waiting until 37 weeks for the mother include severe hypertension, eclampsia (seizures) fetal death in utero, and placental abruption, a life threatening condition in which the placenta detaches from the uterine wall. But these outcomes are uncommon, and they must be weighed against the risks of early delivery for the baby: long NICU stays, early breathing problems, and death. It is a balance without a fulcrum.
ACOG therefore stresses the importance of careful monitoring of mom and baby, and informed, in depth discussions between women and their providers about the possible risks and benefits of waiting to deliver.
For Kerry waiting did not bring a happy ending. At 36 weeks 4 days gestation, mere days before her scheduled induction, the technician at her follow-up ultrasound, had difficulty finding a heartbeat. Her baby had died.
The next hours were a blur. She remembers being induced and laboring for 18 hours. She remembers her OB sobbing as she delivered Kerry’s lifeless son.
Stillbirth, like Kerry experienced, is a rare but devastating complication of pregnancy. It affects only 4 out of 1000 pregnancies in the U.S. For women with preeclampsia, it is slightly more common–rising to 6-10 in 1000.
Life after loss
It’s hard to imagine such a loss. Unlike miscarriage, after stillbirth your loss is out in the open. You have to tell well-meaning relatives and friends who inquire about how your pregnancy is going. There’s no hiding.
My mother also experienced a stillbirth in her first pregnancy, several years before she had me. As a child, I knew her experience only in outline. She was pregnant in the early 1970s, in England, where my father was a visiting professor. She knew something was wrong around 6 months, when the baby stopped moving.
It was the era before ultrasounds and careful monitoring. She went into labor a month later, and her baby was born dead. The nurses ferried him away before she could see him. No one mentioned why he might have died, if he had a clear birth defect or not. She had to argue with her care team to even learn her baby’s sex, that it was a boy.
My mother still chokes up when describing this experience more than forty years later. All these years later, a mother myself now, it remains hard for me to fathom. That silence.
How could you go on to have another pregnancy in peace, without knowing why your first had ended in tragedy? How would you interpret the whisking away of your dead baby, without any contact, any discussion?
One thing is certain: My mother’s experience makes me eternally grateful for the changed norms of sharing information with patients (as imperfect and paternalistic the doctor-patient relationship can still sometimes prove)
For all the pain that she suffered, Kerry has refused to let her tragedy consume her.
She has blogged extensively about her experience and freely shared her story with me. She wants other women to know about the potential risks of preeclampsia. To that end, she has joined national groups like Preeclampsia, Eclampsia & HELLP Syndrome Survivors, a Facebook group run by preeclampsia educators, who work to raise awareness , provide an online community for those affected, and advocate for a cure.
Last we talked, we chatted briefly about how the U.S. is going backwards on maternal care, with maternal deaths and severe complications rising over the last several decades, despite sharp declines in the rest of the developed world, and rates of severe preeclampsia skyrocketing nearly 7-fold since the 1980, Kerry had this to say:
“It’s so angering… It empowers me to share as much as I possibly can, wherever I can.”